Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: charly8 on April 29, 2015, 12:08:19 pm
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Now that a lot of people are coming off treatment, we need a tally of peoples status.
NOTE: Please post only if you have results from post EOT tests SVR 4wk thru SVR 12wk after EOT.
Please list only SVR4 or SVR 12 status. No results on tx or at EOT because most are undetected then anyways.
Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk EOT VL status
2. Treatment duration
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
Current Status
So far we have 15 people that hit at least the SVR4 mark. 3 of 15 have relapsed. (20%)
Breakdown by treatments
8 weeks of tx - 2 of 3 have relapsed
12 weeks of tx- 1 of 12 have relapsed
Note: We currently have a 20% relapse rate. This is with very limited data and certainly not scientific. Even still this does not seem to correspond to the 95% SVR rate that Gilead has boasted in their studies. Lets hope we get some more SVR'S
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8 weeks of Harvoni. Undetected at 4 and 8 weeks. Treatment naive. Genotype 1a. No fibrosis. Initial viral load 3.5 million. I am now waiting 3 months for first post treatment blood work. So far, so good. Good luck to all.
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I am going to start with what people have posted on this board already.
Paleface
1. 12 wk post EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1-F2
6. Initial VL (date) - 5.7 mil
JillLynn
1. 12 wk post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - 1.5 mil
Lukey
1. 6 wk psot EOT VL status - Detected VL of 782,040 (Relapse)
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - 5.7 mil
PaulG
1. 12 wk post EOT VL status - Detected (Relapse)
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown (F3 12 years ago)
6. Initial VL (date) - 2.5 mil
Dragonslayer
1. 11 wk post EOT VL status - Undetected
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2013)
6. Initial VL (date) - 2.4 mil
Mm
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2-F3
6. Initial VL (date) - 6 mil
Nicole_1234
1. 6 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - 0.65 mil
Mikee
1. 8 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - unknown
4. Genotype (1a or 1b) - unknown
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
Kate0b1
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
Katie
1. 8 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - no cirrhosis
6. Initial VL (date) - 2.6 mil
Islandgirl
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
JoeK9999
1. 12 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2012)
6. Initial VL (date) - 3.8 mil
Long_Haul
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F4 (2000)
6. Initial VL (date) - NA
terih
1. 3 wk Post EOT VL status - Detected 414,111 - (Relapse)
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2-F3 (11/2014)
6. Initial VL (date) - 2.56 mil (11/2014)
marv777
1. 12 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) - 6 mil
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8 weeks of Harvoni. Undetected at 4 and 8 weeks. Treatment naive. Genotype 1a. No fibrosis. Initial viral load 3.5 million. I am now waiting 3 months for first post treatment blood work. So far, so good. Good luck to all.
Please only post EOT 4 week or 12 week AFTER EOT results, because most 99% of people go undetected while on treatment.
Thanks!
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...
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Well this is as good a place as any to throw my hat in the ring! I've known for quite a while that I relapsed, but didn't want it to be my first post here and didn't want to be the first to post about a relapse! So here goes! Teri
1. 12 week treatment Harvoni
2. Treatment naive
3. Genotype 1a
4. Fibrosis F2-F3 Nov. 2014
5. Last pill Feb. 3rd, 3 wks. post treatment viral load 414,111
6. Initial viral load 2.56 million Nov. 2014
I seriously doubt I got those in the proper order, sorry! I have an appointment with the Texas Liver Institute next month, I guess one of the Doctors there just spoke at the Liver Conference, so I feel like I've hit the Big Time! ;)
I am holding out great hope for everyone here and wish every one of you the best!
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Now that a lot of people are coming off treatment, we need a tally of peoples status.
NOTE: Please post only if you have results from post EOT tests SVR 4wk Thur SVR 12wk after EOT.
Please list only SVR4 or SVR 12 status. No results on tx or at EOT because most are undetected then anyways.
1. EOT 8+ weeks
2. TX 12weeks
3. tx experienced
4. Genotype (1a or 1b)
5. none
6. undetected
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Charly,
Awesome Job compiling this data!
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Hello all, just received my 12 week EOT and came back undetected and all other numbers are great. I am a two time non responder, did mono therapy in 2000 and then in 2004 did peg- intro and ribavarin and had to stop tx at 48 weeks due to side effects. Started Harvoni on Nov. 5th and finished on Jan. 28 th. Vitals, 1a, F- 1, 6 mill. viral load at start of tx. Did 12 week tx and was undetected at 4 and 12 week tests. I am now free at last of this dreaded disease.
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1. 4wk post EOT UND (12 week test june 5th)
2. 12 weeks
3. experienced (triple therapy)
4. Genotype 1a
6. last test was from relapse 100,000
kate
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Thank you Charly! This is a wonderful resource. My missing information is that I was F2-F3. I will post all the info next month as you suggested.
Mm
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Thanks for doing this Charly. This is really good information! For the newbies, I do think the EOT test results would be beneficial so they can see that strong responders who test Detected can still clear. This is something where Harvoni is different than the previous treatments and is a new finding just recently published. My doctor wasn't even aware of it. It sure would have helped me out when I got my EOT results as DETECTED. It could be they will start to eliminate EOT tests altogether, but I don't think that is the case at this time.
Just my opinion and thanks again for taking the time doing this!
Katie
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Double posted ???
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Thank you Charly! This is a wonderful resource.
Indeed. Very nice compilation. Thanks!
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Charly. Thank you for doing this. It is very appreciated!
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Thanks for gathering this info-- I am self pay and took all the equity out of my house to make sure I could get "cured" Only on day 17 but this could change my mind on filling the prescription … 35,000 for each upcoming month (2 and 3 ) . :(
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Thanks for gathering this info-- I am self pay and took all the equity out of my house to make sure I could get "cured" Only on day 17 but this could change my mind on filling the prescription … 35,000 for each upcoming month (2 and 3 ) . :(
Considering GT 1a had a very low cure rate and horrible treatment in the past, Harvoni is a major breakthrough and is working wonders. Keep in mind, very few people are 8 -12-24 weeks post treatment so the data isn't in.
Have you called Gilead to see if they could assist you with the cost. It seems they are helping many without insurance coverage.
Good luck to you, no matter what your decision. We all have to do what is best for us, but please consider the alternative of severe liver disease. Give Gilead a call!
Katie
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Giliead has a max household income cap of $100,000.00/year. When I was having difficulty being approved by my insurance I called and asked.
Jjules please stay the course you don't want to miss this train.
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I am surprised that nobody has posted results in almost a week! I thought a lot of people came off treatmetn mid to late march.
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I am done with my 24 weeks today I will get back to you after I get my week 4 and week 12 post treatment viral loads.
Anybody else with results to report?
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There are probably quite a few just waiting for post treatment tests, and then there are those who once finished will just drop off the forum. It might be good to post on other threads to let them know this survey is being done. I happened upon it accidentally. It can be difficult to find a new thread.
Congratulations Lynn!!! We will all be waiting with you and sending good wishes for a complete cure!
Katie
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Good luck Lynn K. We'll be riding the 12 weeks wait together I guess?
My doctor just called me and wanted to have a VL done asap. I wonder why because if I was UND after 4 weeks, why would he expect anything else than UND at EOT? I only had one VL at week 4 during the last 24 weeks. As much as I know, you don't go back up once you clear the virus? Anyway, I'll post again with my results later on..
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Thanks for your well wishes I guess I can officially board the waiting train.
I am going to ask about getting a 4 week test since it is said to be about 98.5% probable SVR by then. And the the wait for the big 12 week test.
Mario I wouldn't worry too much he is probably just getting data they just want to see the EOT test. I wanted to trade the EOT for a 4 week post and they said we will just do both
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PAPPY
1. 12 wk post EOT VL status - Detected VL 7867179 (Relapse)
2. Treatment duration - 8 wks
3. tx naive or experienced - Unknown
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - Unkown
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I cant modify my posts, but here is the current status:
Current Status
So far we have 16 people that hit at least the SVR4 mark. 4 of 16 have relapsed. (25%)
Breakdown by treatments
8 weeks of tx - 3 of 4 have relapsed
12 weeks of tx- 1 of 12 have relapsed
Note: We currently have a 25% relapse rate. This is with very limited data and certainly not scientific. Even still this does not seem to correspond to the 95% SVR rate that Gilead has boasted in their studies. Lets hope we get some more SVR'S. We will need the next 64 people to report Undetected to get back to 95% SVR rates.
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These results strengthen my opinion that 8 weeks should be offered only in limited cases and not arbitrarily or following a strict set of rules. I really am sorry to hear the bad news for those 4 relapses.
Thanks to Charly8, we all appreciate the work you are doing for our benefit!
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+ 1 thanks for doing this, its good info to know going forward since we are the real test
people
kate
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After 24 weeks treatment, I still have light upper quadrant pain so I don't think it's virus related given the fact I had cleared the virus after 4 weeks! I also still have tinnitus and a kind of vertigo. One good news is that 1 week after the end of my treatment, I am starting to feel like my old self (get up and go, mood, etc). I am now watching the group to see how things are working out for everyone. Thanks again Charly for your implication. We all appreciate it (even my doctor)!
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Cmon all you 8-weekers. Give us some good SVR4 and later results! We cant let this 75% 8 wk failure stat stand... Im sure as more 8 weekers complete treatment, those failure stats will go WAY down.. They'd better!!!!! I hope that some national level relapse data comes out soon so we can get a true picture of whats happening with Harvoni in the real world.
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Hi Charly, I just wanted to weigh in, after seeing my new Doc, who from here on out will be referred to as Dr. Awesome! He doesn't think that my treatment period was long enough, he doesn't think prior Doc made a proper assessment! I thought I had a fibroscan, I didn't, had some kind of weird ultrasound! No IL28B testing! Since I have a fatty liver and weigh more than I should, he would have done 24 wks. So there's that! Sounds more like Doctor failure to me than medication failure! I should be in their DAA failure study in August! So good news!
And yes, thank you for doing this!
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Hi Charly, I just wanted to weigh in, after seeing my new Doc, who from here on out will be referred to as Dr. Awesome! He doesn't think that my treatment period was long enough, he doesn't think prior Doc made a proper assessment! I thought I had a fibroscan, I didn't, had some kind of weird ultrasound! No IL28B testing! Since I have a fatty liver and weigh more than I should, he would have done 24 wks. So there's that! Sounds more like Doctor failure to me than medication failure! I should be in their DAA failure study in August! So good news!
And yes, thank you for doing this!
Before I commenced treatment, I asked my doctor if we needed to factor my unfavorable IL28B status, and he told me they dont check that in conjunction with Harvoni.. Apparently, its correlation is statistically insignificant.
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Are you sure it wasn't a fibroscan? That would be exactly how I would describe a fibroscan as a kind of weird ultrasound. With a thumping action. Otherwise I have no idea what test that would have been.
Have you see this info?
When a short course of sofosbuvir/ledipasvir fails, some people can be cured of hepatitis C with a double treatment duration
http://www.aidsmap.com/When-a-short-course-of-sofosbuvirledipasvir-fails-some-people-can-be-cured-of-hepatitis-C-with-a-double-treatment-duration/page/2965963/
Best to you
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@ Dragonslayer, The reason the new Doc gave for having that test done, is that it measures how strong your immune system is, the stronger your immune system, the better your chance of SVR! Maybe since I have an auto immune illness, that factored into my relapse.
@ Lynn, That is one of the Docs where I'm doing my next treatment! They are HepC warriors! I really think my new Doc wants me on a newer and better combo, hence the trial in August. I truly feel like I have managed to stumble into something very good! :)
I have no idea what the other test I had is called, but I have a scan coming up on June 1st, so I will let you know how they compare!
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Teri,
Good luck with the new Dr. I sure hope they find a solution for you.
Deb
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Deb, thank you so much! I feel like I'm in good hands finally and have much faith in my soon to be had SVR!
Good luck to you also, when is your SVR date?? I'll be here cheering you on!
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Terih. I have read extensively on the development of cures and as much as I know, Harvoni doesn't really need your immune system to work contrary to the old Interferon which boosted your immune system in order to destroy the disease through you! Harvoni is more like a little glued cap that will attach itself to the virus 'legs'. When the little legs are capped, the virus can't grab itself to new liver cells and can't reproduce.
It is sure that if your immune system is compromised, other considerations might be assessed for your specific treatment. Good luck with your future treatment, my prayers are with you!
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Hi Mario, Thanks for the info! I'm thinking, since I do have an autoimmune disease, it might have something to do with the big R! Who knows, all I know is they took 12 vials of blood to try and figure it out. And no cookie! Adulthood, pshaw! ;D
Thank you so much for the good wishes, and know that I'm wishing the best for you also!
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Hi all.....I am 8 weeks post treatment with Harvoni and still am undetected. Yea! Thanks all for sharing.
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I also relapsed 12 week post treatment.
Treated for 12 weeks on Harvoni.
I have absolutely no idea how the relapse happened.
My other info is in the signature line.
This makes what? 4 relapses out of 16 folks treated? That's 25% I think.
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Cally. I'm really happy for you! Just wish I'll be able to say the same in 6 more weeks!!!
Johnny. Sorry for you. I think there are more than 4 out of 16. We have one of us who keeps tabs on the rate of success. He should be doing new totals soon. I would think there are at least 6 on this forum that relapsed...
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Sorry to hear that Johnny_Wayne. What is your next step? Did or do you have any of the post tx symptoms? I hope you can stay positive tho I know that will be hard. Cally
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Please keep in mind, not everyone is reporting and I am sure many who have completed the treatment, have just dropped out of the forum, especially if they are undetected. The results are disappointing so far though so please spread the word to report to this thread.
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Thanks Mario555.....Cally
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Thanks for the compilation.
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You can add mine in ..geno type 1a, vl 2.4 mil,, f0-f1 fibrosis, harvoni 12 wk , 17 days vl 72, finished april 7th..now need Dr for side effects ..low iron, high blood preasure, severy body aches what dont ache don't work and just top it off with 15 extra pounds ...yes I'm grateful. ..waiting 12wk eot
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Terih. I have read extensively on the development of cures and as much as I know, Harvoni doesn't really need your immune system to work contrary to the old Interferon which boosted your immune system in order to destroy the disease through you! Harvoni is more like a little glued cap that will attach itself to the virus 'legs'. When the little legs are capped, the virus can't grab itself to new liver cells and can't reproduce.
It is sure that if your immune system is compromised, other considerations might be assessed for your specific treatment. Good luck with your future treatment, my prayers are with you!
Mario, I have a comment about the immune system, it seems reasonable to assume ...
IF the immune system was working as designed it would rid the hepc virus or any Virus on its own, like some people are able to do without anti viral drugs..
So, with that logic, isn't it reasonable to assume the Immune system is not working to the full extent...
Or to put it another way, Is Compromised?
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I agree that most people clear the virus on their own when first infected. The ones not clearing it are often infected massively and the immune system is overwhelmed such as in a blood transfusion. Or in my case, repeated attacks through injections.
Even if your immune system was 100 times more powerful (interferon treatment), the virus attacks are too strong to be beat!
Harvoni doesn't use your immune system, it attacks the virus directly in screwing up its capacity to reproduce. This is why 2 DAA's (direct acting agent) are better than one because it 'hits' the virus two ways. With Inf-riba, you had only 1 DAA and it was "non-specific". With Harvoni, you have Sovaldi + Ledipasvir.
New novel ways to beat the virus are coming out using 3 DAA's or other ways. A wait of 1 extra year will offer many new ways to get rid of the virus. This is why I suggest to people who are less in a hurry to wait!
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Good morning Mario, I've thought on this a lot, what came to me is this....You know how some people have a low viral load at end of treatment, and their immune system takes care of it, maybe mine just couldn't do that! That is what makes the most sense to me about why it is important to have a good immune system with these drugs. Maybe I'm wrong, what do you think? I do have an autoimmune disease, but never thought it would factor into this treatment. Hope you are doing well!
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@Mario---thanks so much for that excellent explanation of how Harvoni works...although I don't have a compromised immune system, per se, I was sick with cold viruses/sinusitis for the entirety of my treatment. But the Harvoni got me undetected by week 4 of 12. Waiting EOT 4 weeks VL on the 18th.
It's this waiting period--while I"m still recovering from the colds that I'm most concerned. That my immune system is too busy fighting too many viruses---unless the Harvoni indeed killed every hcv.
Teri, my understanding about the people who are very low detected at EOT have so called impotent viruses. Fragments of hcv that are unable to replicate but the machine picks them up anyway.
I'm hoping that harvoni eradicated it by EOT!
Best luck to all of us!
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Charly,
Awesome Job compiling this data!
I agree :)
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Mario555
Excellent post.
BTW if I come back detected I'm going to wait until 3DAA's are approved before retreating.
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1. 4wk EOT undetected
2. 8 weeks
3. tx naive
4. Genotype 1a
5. F0-F1 fibroscan score 2.5 Jan 2015
6. Initial VL 689,594 feb 10 2015
I would also like to mention I was detected at<15 4 weeks into treatment
Numbers are looking good so far I am super happy
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Good luck with your next labs!!!!!
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I will be finishing 8 weeks on Sunday May 17, EOT labs scheduled June 1, UND at 4 weeks, will post when I know.
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@Momof3
Yay! I was just recently thinking about you. Congratulations! What a wonderful feeling it must be.....
I'm having my 4 week EOT labs next Monday. I'm beginning to get nervous. Seeing your results makes me feel better. Deep breaths.
Enjoy your life without HCV! PS: since you've had it all your life, are you experiences any changes in your body. Things that you thought were just random symptoms/problems beginning to resolve themselves?
All the best, Meg
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Meg...
Thanks for the kind words!! Fingers crossed for you aswell! I didn't really have any symptoms of hep c except for fatigue! As of now I have less of that and the kids aren't draining me as much. My hair is growing faster? It grew quickly before but now even more? Lol my hairstylist I'm sure is enjoying that! Other than that nothing different. My skin is still horrible but I get that from my fathers side of the family so bummer lol
Hope you're doing well, I can't wait to hear your results
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Momof3
How nice that you have better energy. I bet that as time goes on and your body heals you'll feel even better.
How fun that your is growing faster....my skin is not better either ;-( LOL....
Thanks for your thoughts. Only we know how hard it is and how badly we want to be cured...Hugs, Meg
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Not sure of all my numbers drs never sent me results on everything
Genotype 1a
No cirrhosis
Diagnosed 2014
Started 8 wk treatment of harvoni
2,4,6,8 wk undetected
June will be my 3 Month post treatment test
I feel brand new no longer sick
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Momof3
Congrats.
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Bob, I saw an article on BMS's triple DAA on this website today. Looks promising. I stumbled onto that news while reading the last post from editors.
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Bob, I saw an article on BMS's triple DAA on this website today. Looks promising. I stumbled onto that news while reading the last post from editors.
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Karen
I've been following the DAA on the website too and I get Lucinda's FB feed which is excellent.
I'm trying to get some friends on treatment, glad to see there's more and more options.
Bob
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Anand:
4 wk and 12 wk after EOT: undetected
Treatment for 84 days or 12 wks from 11/12/14.
Treatment naïve
Genotype: 1a
F3
1.18 mil (11/12/2014)
Age: 77 yrs
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Anand
Great news, congrats :)
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Congratulations Anand! What great news for you.
I am curious how you are feeling. Many of us had more difficult post treatment symptoms than while on treatment or very similar.
Have a wonderful summer and hope you are feeling good.
Katie
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Congratulations Anand!!!!!
I'm so happy to hear about these reports of 12 week EOT Undetected. YaY!!!!!
Deb
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1) 4wk EOT - RELAPSE - 510000 VL detected - was UND at 4wk and 12wks during Tx
2) 12wks Tx - start 1-8-15
3) Tx naive
4) 1b
5) Fibrosure F2-F4 - Dec. 2014
6) 6.5m VL - Dec. 2014
7) Blood trans 2 hosp '80
F - age 64
Hi all, Congrats on all the UND's. I re-tested 4 days after 4wk EOT VL and got 440000 VL. I've been on a strict diet and supplement protocol based on food sensitivities and nutritional needs as advised by my orthomolecular immunologist these last 24yrs. I have done meditation and yoga nearly all my life as well. Since 2wks post EOT I have felt better than I have in decades, working out daily at the gym and able to bike 3mi a day and even am able to do intensive strength training now as well. I feel better in every way. LFT's, Lipid profile, Metab. profile, Prothombin time, and ultrasound are all normal. It makes so little sense that I'm detected at this time. Any thoughts are appreciated. Keeping the faith here.
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Bob, Katie and Deb,
Thanks. I really appreciate. I have been away from this forum for a while for the past few months.
Now to Katie: I have been very lucky, during and post Harvoni treatment. They were uneventful. Since I am 77 years of age my doctor opted for the 12 week treatment instead of 8 as may have been warranted by other factors. I had a heart attack in 1987 with HEP C infused blood transfusion. I have been running 2 miles every other day and every other day I visit Gym to work the machines to keep my blood flowing especially as I get older. I have been doing this for several years. I also do breathing exercise and Yoga and meditation. This may have helped. During treatment I did shoulder stand so that my legs were up and moving like scissors just so the Harvoni got a good circulation in my legs. I am not saying this worked or not but I did not want leave anything to chance. I have to go for fibroscan in February 2016 to monitor the status of my liver. Thanks for your concern and you have a wonderful summer. Will be in touch. Anand
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Dandelion
Sorry about your HepC lab result. Sounds like your doing all the right things health wise and have some good people working with you. Have you given any thought to re treatment?
One thing VL 6.5M and only 12wk treatment, I thought over 6m it was 24wks.
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Dandelion
Sorry about your HepC lab result. Sounds like your doing all the right things health wise and have some good people working with you. Have you given any thought to re treatment?
One thing VL 6.5M and only 12wk treatment, I thought over 6m it was 24wks.
No, Bob... 6 mil is the cutoff for 8 wk eligibility.. Otherwise, its 12 wks. 24 wks is reserved for treatment experienced AND cirrhosis.
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Hi Bob,
Thank you for your kind words. I've thought about it and even have PAN ready to pay my deductable if I go for another round which my Dr will Rx me if I request. I'm just not sure I should given I may have variants and cure rate is less than 50% I think. Confused to say the least. Also thinking I should wait til 12wk post (late July)to decide as I may have cleared by then?
Thanks Again,
Dandy
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Just to add to the results being posted here:
Yesterday I received word from my doctor that my 12 weeks after treatment lab results show that I am cured.
I was a genotype 1A with no previous treatment experience. My liver status was F1.
My treatment was with Harvoni for 12 weeks.
-Doug
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Great to hear Doug... Congratulations on the end results. I'm still in the race for a good finish. On week 7 of Tx 5 to go. :) ;D
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No, Bob... 6 mil is the cutoff for 8 wk eligibility.. Otherwise, its 12 wks. 24 wks is reserved for treatment experienced AND cirrhosis.
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Thanks Paul, I remembered that after I posted last night…I’ve been sick this week so the brain fog is back
Hi Bob,
Thank you for your kind words. I've thought about it and even have PAN ready to pay my deductable if I go for another round which my Dr will Rx me if I request. I'm just not sure I should given I may have variants and cure rate is less than 50% I think. Confused to say the least. Also thinking I should wait til 12wk post (late July)to decide as I may have cleared by then?
Thanks Again,
Dandy
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Dandy
This is a tough one. I wish I had some words of wisdom but……………..
Bob
Just to add to the results being posted here:
Yesterday I received word from my doctor that my 12 weeks after treatment lab results show that I am cured.
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Great news Doug, congrats.
Bob
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Just want to say a big thank you to all posting under this topic, as I am still fighting w/ ins. to even get the Harvoni. I joined recently and hop around to various topics, and this is the first I've seen this particular question. Does this forum do polls anywhere, as this is basically what this is? Can the moderators help with this?
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We have a poll of some kind. You are supposed to report your post treatment results in 4-8-12 weeks UND or with relapse. One of us is keeping track of our results. Until recently, stated results of 95% cures are not matching real life results. It is extremely interesting to follow!
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Sorry I have not updated in a while, I have been on vacation and without internet.
Anyways I wish I could modify my posts, but I cant.
Looks like we got some results:
DLedin
1. 12 wk post EOT VL status - Undetected (SVR)
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) - unknown
Dandelion
1. 4 wk post EOT VL status - 510000 (relapse)
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - F2-F4 Fibrosure
6. Initial VL (date) - 6.5 mil
Anand
1. 12 wk post EOT VL status - Undetected (SVR)
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Initial VL (date) - 1.18 mil
MomoF3
1. 4wk EOT undetected
2. 8 weeks
3. tx naive
4. Genotype 1a
5. F0-F1 fibroscan score 2.5 Jan 2015
6. Initial VL 689,594 feb 10 2015
Johnny_Wayne
1. 12 wk post EOT VL status - detected (Relapse)
2. Treatment duration - 12 weeks
3. tx naive or experienced - Unknown
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F4
6. Initial VL (date) - Unknown
Cally Balmoral
1. 8 wk post EOT VL status - undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - Unknown
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - Unknown
Current Status
We have 22 people that hit at least the SVR4 mark. 6 of 22 have relapsed. (27.3%)
Breakdown by treatments
8 weeks of tx - 3 of 5 have relapsed (60%)
12 weeks of tx- 3 of 17 have relapsed (18%)
Note: We currently have a 27.3% relapse rate. This is with very limited data and certainly not scientific. Even still this does not seem to correspond to the 95% SVR rate that Gilead has boasted in their studies. Lets hope we get some more SVR'S. We will need the next 98 people to report Undetected to get back to 95% SVR rates.
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Oh... and I will be joining this list in about a week. I just gave blood for my 4 week post SVR results.
Wish me luck!
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Charly8 my info is all wrong if that is myself check my signature pls :)
I did post all my stats properly on Wednesday if you would like to scroll up a bit
I think it's awesome for all this info to be all put together thank you for taking the time to do it all
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Good Luck Charly8!! And thank you for all your work compiling data.
Dandy
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Fingers crossed for you Charly! Can't you just copy and past to keep the list going? You are probably doing that but thought I'd ask. Thanks so much for taking the time to do this. it is very valuable and how was your trip? Awesome, I bet! :D
Katie
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momo,
Sorry, corrected now.
Thanks Katie, I was trying to keep the same format for the posts. I originally wanted one list in the first post that was easily compiled, but I can not edit those posts.
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Charly...NOW I understand! HA! I guess I'm a bit slow, and here I thought the brain fog was gone!
Katie
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Charly8. The best of luck to you with your results! 2 weeks after the end of my 24 weeks treatment, my doctor asked for a VL. I should get my VL2 next week. I only expect to see if I am UND (I was after 4 weeks). I will only get another test after 12 weeks in the middle of July. I am turning 60 in July so it would be a fantastic gift for me!
As for you, congratulations for taking time to go on a holiday following your treatment. Often when vyou have had hep c for a long time, we tend to let life's little pleasures to go by us (martyr syndrome??).
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Connie
1. 2 weeks barely detected, 4 weeks und, 8 weeks und, 10 week und, 12 weeks viral load of 6,000, 3 months after EOT viral load 1.5 million RELAPSE
2. 8 weeks of Harvoni
3. Tx naïve
4. 1a
5. F-2
6. Initial viral load date ... who knows but in 1996 about 700,000
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Thanks for compiling this list... I have at lease 3 other people that have relapsed on other groups not including Dandelion :-[
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Good Morning/Afternoon/Evening
Sorry I haven't been on the forum but my genotype was 1B
I started Harvoni treatment 01/10/15 and completed the 8 weeks on 03/06/15
My test showed I had 15 out of 2,017,239 after treatment
Recent test:
Component Latest Ref Rng 5/15/2015
ALBUMIN 3.8 - 5.0 g/dL 4.1
AST 10 - 35 U/L 17
ALKALINE PHOSPHATASE 0 - 153 U/L 89
ALT 10 - 35 U/L 14
BILIRUBIN 0.3 - 1.3 mg/dL 0.3
BILIRUBIN, DIRECT 0 - 0.3 mg/dL <0.2
PROTEIN 6.0 - 8.3 g/dL 7.2
HCV RNA HCVXD IU/mL HCV RNA NOT DETECTED
HCV RNA COMMENTS :::::::::::::::::::::::::::::::::::::::::::::
I am happy to inform you that the hepatitis C virus is no longer detectable, which is certainly reassuring given the fact that it was still detectable at a low level when last checked.
Although this is great news, we will need to check again in about 6 weeks to be sure that the virus remains undetectable.
If the virus level is still negative at that time, 12 weeks or more after finishing treatment, this indicates that the hepatitis C has been cured.
I am doing the happy dance
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@DeeDee Congratulations... Do you feel better? Do you notice any change?
Deb
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Hi debham
Thank you...I never felt any kind of way. I asked for the test and that's how I found out. It never showed up in any of my physicals. I think the 3rd thru 5th days I lost my appetite, had a rash and felt nausea but it passed. The only thing I have notice now is that my urine is clear.
I was disappointed when my first test result came back and showed I had not cleared it but this last one made me feel a whole lot better.
There are some amazing people in this forum and that helped a lot also :)
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Connie
1. 2 weeks barely detected, 4 weeks und, 8 weeks und, 10 week und, 12 weeks viral load of 6,000, 3 months after EOT viral load 1.5 million RELAPSE
2. 8 weeks of Harvoni
3. Tx naïve
4. 1a
5. F-2
6. Initial viral load date ... who knows but in 1996 about 700,000
Connie
Sorry to hear that. Time to go back to Dr. and continue the battle. The cure is right around the corner for all of us if we are persistent.
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Good Morning/Afternoon/Evening
Sorry I haven't been on the forum but my genotype was 1B
I started Harvoni treatment 01/10/15 and completed the 8 weeks on 03/06/15
My test showed I had 15 out of 2,017,239 after treatment
Recent test:
Component Latest Ref Rng 5/15/2015
ALBUMIN 3.8 - 5.0 g/dL 4.1
AST 10 - 35 U/L 17
ALKALINE PHOSPHATASE 0 - 153 U/L 89
ALT 10 - 35 U/L 14
BILIRUBIN 0.3 - 1.3 mg/dL 0.3
BILIRUBIN, DIRECT 0 - 0.3 mg/dL <0.2
PROTEIN 6.0 - 8.3 g/dL 7.2
HCV RNA HCVXD IU/mL HCV RNA NOT DETECTED
HCV RNA COMMENTS :::::::::::::::::::::::::::::::::::::::::::::
I am happy to inform you that the hepatitis C virus is no longer detectable, which is certainly reassuring given the fact that it was still detectable at a low level when last checked.
Although this is great news, we will need to check again in about 6 weeks to be sure that the virus remains undetectable.
If the virus level is still negative at that time, 12 weeks or more after finishing treatment, this indicates that the hepatitis C has been cured.
I am doing the happy dance
I'm doing the Happy Dance with you DeeDee!
That is 3 for 3 on Detected at EOT but cleared by post week 8 or 12. Are there any others out there where this has occurred? Please let us know!
Have the best time of your life DeeDee...a great 2015 and forward we go!
Katie
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DeeDee
Congrats
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Often when vyou have had hep c for a long time, we tend to let life's little pleasures to go by us (martyr syndrome??).
Thanks mario! and very true.
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Just to update with the latest info for Connie & DeeDee.
Current Status
We have 24 people that hit at least the SVR4 mark. 7 of 24 have relapsed. (29.1%)
Breakdown by treatments
8 weeks of tx - 4 of 7 have relapsed (57%)
12 weeks of tx- 3 of 17 have relapsed (18%)
Note: We currently have a 29.1% relapse rate. This is with very limited data and certainly not scientific. Even still this does not seem to correspond to the 95% SVR rate that Gilead has boasted in their studies. Lets hope we get some more SVR'S. We will need the next 116 people to report Undetected to get back to 95% SVR rates.
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You cannot extrapolate from these reported results.
First, not everyone is posting results on this thread.
Second, those who fail treatment may be more inclined to report these numbers on this thread.
Third, being detected with a minimal viral load at the SVR4 mark does not mean the person will not achieve a SVR12 mark (a few viruses maybe present - but neutered and unable to replicate).
Fourth, a 57% failure rate with 8 weeks of Harvoni is clearly inaccurate, as is an overall failure rate of 29.1%. The numbers are simply specious.
Mike
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You cannot extrapolate from these reported results.
First, not everyone is posting results on this thread.
Second, those who fail treatment may be more inclined to report these numbers on this thread.
Third, being detected with a minimal viral load at the SVR4 mark does not mean the person will not achieve a SVR12 mark (a few viruses maybe present - but neutered and unable to replicate).
Fourth, a 57% failure rate with 8 weeks of Harvoni is clearly inaccurate, as is an overall failure rate of 29.1%. The numbers are simply specious.
Mike
Mike,
I agree with your points, and I clearly state that it is not scientific.
I am just reporting the facts of the relapse rates "as reported" on these boards to the best of the information available. The reader has to interpret these results for themselves.
Your point number 3 needs distinction though. There are definitely people that remain detected at very low levels <15 u/ml that go on to SVR. And these people are not included as relapses. (i.e. Katie and Dragonslayer and others)
But the results when people are in the 500,000 vl range (as stated on this board) are clearly relapses.
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Also, I was hoping that there would be some more official real world data as to the relapse rates for Harvoni, I have searched but not found anything online. Only the FDA phase studies and NDA filing data.
If anybody knows of said real world data please provide a link, I was hoping that there would be some EASL literature but sadly not found anything. According to Gilead's earnings report there are approximately 70,000 USA & 20,000 EU patients coming off treatment and some more official data would be helpful for the prescribing doctors and patients.
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The real world numbers should closely mirror the clinical numbers, which are 90%+ cure rates.
This is because the efficacy (cure) rates have been statistically validated (confirmed) during phase I-III clinical trials. Because of this, and the research methods used, there should be little, if any statistical variance or deviation from the clinical results and the real world results.
What needs to be studied, however, is the long-term effects of taking Harvoni and it's effectiveness on sub-populations not included in the clinical trials (which is the purpose of phase IV research).
Thus:
Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase II: The drug or treatment is given to a larger group of people to DETERMINE IF IT IS EFFECTIVE and to further evaluate its safety.
Phase III: The drug or treatment is given to large groups of people TO CONFIRM ITS EFFECTIVENESS, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.
Because of the research methods used to study the efficacy Harvoni on the populations studied, we can conclude with a high degree of medical and statistical certainty that the clinical results will be reflected in the real world numbers.
Best wishes, Mike
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Hi Mike, I agree but it is interesting to see how our fellow warriors are doing since we have communicated for so long and struggled together through our hopes and fears.
One thing I am becoming concerned about, are the issues folks are dealing with after they finish their treatments; many having symptoms which they have never experienced before. I am lucky as I am doing fairly well, did great with Harvoni and then lost my endurance and energy afterwards with a couple days of severe vertigo. This past week I feel improvements daily so am not concerned for myself, however some are having serious health related issues. I would like your views on this and wonder how the follow up on long term post treatment consequences are being tracked? I would think they would need to know what is being experienced.
As always, thanks for your input and support.
Katie
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I think the main point of doing this compilation of results (thank you Charlie8) is to provide us with a bit of homemade feedback! Also as Katie states, knowing fellow warriors tribulations.
My personal opinion is that real world numbers will be lower than the study results. The reason is that during the studies, patients are 'somewhat' hand-picked, are better followed and have been tested up to 12 weeks afterwards.
In real life you get a mix of under prescribed people, lack of adherence and God forbids, you might have a relapse at week 13.
The company wants to put its best face forward and will underpublicise its negative press.
As a conclusion, this medication is great looking at the success for many of us. Unfortunately, relapses will end up being twice as advertised (my guess)
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Important -- I spoke with a person at Gilead Sciences today, as I wanted to ask what data was being compiled POST TREATMENT, for how long, by whom, and when such would be made available to the public. I was told they are not required by the FDA to compile data post market ...... but they of course do want to know of any relapses or other side effects as more and more patients finish their treatment. I was told doctors, or even more often, PATIENTS, usually will contact them re: relapses or serious events, i.e., the bradycardia medication issue that came up in March. I was also told that this person was not aware of any "specific" Phase IV studies, as referenced by Mike earlier on this post, but that trials were certainly still being conducted as could be found on the clinical trials.gov website.
SO -- the bottom line is that both patients and their doctors need to take it upon themselves to contact Gilead with any issues. Although this "poll" Charly8 is doing isn't perfect, this forum is probably the fastest way anyone who's interested is going to get firsthand info on the issues of side effects or relapses.
I called Gilead's Forest City headquarters at 650-574-3000 and spoke to a person in the medical/clinical dept. Hope this helps!! FT
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I disagree a bit Mario. Scientific research has to follow guidelines, not only set by the company but FDA and undergoes rigorous scrutiny. I don't believe they pick and choose their results or their methods. Since it is based on facts not emotion it sometimes looks as if they are hiding something or skewing it a bit as we experience it on a personal level. I see the reason for numbers on Charly8's thread to be more of what Mike pointed out where everyone is not posting and agree those who relapse are more likely to continue the forum than those who are successful.
Our forum has many folks who have a wide range of health issues which can affect not only the outcome of the treatment but the negative symptoms and may actually worsen existing conditions. Everything is connected. The trials couldn't possibly have all of those variables included the drug would never get approved for the time that would take.
Although I believe everything folks post, being realistic, people can post anything they want and may not always be truthful, may still be living a lifestyle not conducive to healing and may not have followed the suggested restrictions or schedule which was recommended. In addition to that, everyone has a different threshold for pain and discomfort and what one person feels is minor, may be excruciating for another. I have seen this with people I know. I have a very high threshold for pain which may be the reason I have so many joint issues. If I hurt myself, I'd ignore it and keep on going.
Those of us who started Harvoni when first available, I would think, have valuable information to share for the future, and I am hoping the doctors are tracking and submitting information. The doctors should be objective and aware of medical history which would be beneficial for future treatments and guidelines.
All in all, I am delighted I took the treatment however I won't be convinced I am cured until SVR24. Until then, I am enjoying every day as each day is a gift.
One thing for sure, huge leaps are being made to rid everyone of this disease and I wish everyone the best and will always try and support those on the journey. My heart breaks a little with each relapse, but I remain hopeful a cure is right around the corner for all!
Time to get out in that sunshine!
Katie
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I hate that anyone has relapsed but I have hooked up with a few people that have and it has been very beneficial for me... the first thing I did when I found out I relapsed was to call Gilead...I hope anyone that does relapse makes that call.... ... I am glad you say the phase IV testing is going on, I had no idea about that.... I am very interested in seeing this list Charlly8 has gotten together, I think it is a great idea... of course I think we all know that it is not a reflection of all those that have taken the treatment... but I like to see what other people's experience was, how long they took harvoni... how long they had virus... on and on..............
peace to all, connie
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just got my 4 week post treatment blood work and im happy to say still undetected
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007.congrats! This is a good news for today!
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OK here we go. I started at a VL of close to 11 mill. I'm now have my 4 week post TX. results and here goes. ALT 24, AST 22, VL undetectable. YES maybe I have beat it. 12 weeks on Harvoni and I believe it's gone. I'm still not feeling good at all but with the virus gone I can only get better!!!! Some say it's no problem but let me tell you for me it was hard and I'm now having a harder time than when on treatment. I hear there are better TX options coming soon. My advise is to wait and see if you can without causing yourself problems. TX is only going to get better now that they know how to fight HepC. By the way I'm stage 3 as far as damage to my liver. I will repost at 12 weeks post TX
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Mike Conwell and 007GUY
CONGRATS!
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Headed for the vampires tomorrow for my first post tx blood draw. Because I am F4, tx experienced and finally took the last pill just this morning all I want to see is another <15 and a good alt and ast reading.
Like Mario I have felt like crap for the last little while. But I must add that the boost that I experienced during the first few months was incredible. So just perhaps as the liver heals we all will experience bouts of weakness and other things that make us question whether or not the treatment worked.
My joints are definitely stiff and there is more bowel disturbance going on very much the same as I felt before treatment so every finger is semi crossed and so are all my toes.. but it hurts like hell!
I do not REPEAT think that these issues are side effects of Harvoni. I firmly believe they are OMS complicated by having compromised liver functions! OMS= Old Man Syndrome
I really hope that my stat can be one that helps up the cure rate we are seeing.
My doctor does not have me scheduled for a 4 week post RNA test like many here but if I am UND currently we will just monitor liver functions and then do another RNA test at 12 weeks post EOT in August.
NOW for the long term fishing plans after I get a wedding invite out of the way. Maybe I will paddle my pontoon boat up to Alaska and see if there are any fish along the way. Now that would be an epic fishn' trip! Might cause the coast guard to have fits though if I didn't file a trip plan first.
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NOW for the long term fishing plans after I get a wedding invite out of the way. Maybe I will paddle my pontoon boat up to Alaska and see if there are any fish along the way. Now that would be an epic fishn' trip! Might cause the coast guard to have fits though if I didn't file a trip plan first.
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Mugwump
This sounds fun. Good luck with the labs.
BTW OMS= gonna steal this one.
Bob
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I am now 10+ weeks post Harvoni and am starting to finally feel better. Not as fatigued and not as achey. At 8 weeks post Harvoni I was still undetected. Yea!!!
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I am now 10+ weeks post Harvoni and am starting to finally feel better. Not as fatigued and not as achey. At 8 weeks post Harvoni I was still undetected. Yea!!!
Thanks Cally and Bob I need the encouragement. I was not expecting to feel like hell at EOT. But at least it is nothing compared to what peg+rib did by knocking my hemoglobin for a loop and putting me in hospital with leg craps that needed a shot of morphine to relax and deep lumbar steroid injections just so I could work again. My strength is better than it has been in years but my stamina is down and I generally feel like hell.
I was hoping to be recording, performing and working by now but the joints in my hands are far too stiff and I am straining to play. Right now there is no way I could even use a knife to prepare foods professionally because of the way my hands and joints are hurting.
Eric
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Nobody even lets me near a knife, as I am so shakey. But I'm with you.... the peg+rib was the worst. But with Harvoni things are finally looking up. Had 2 iron infusions that has helped a lot. Also deep breathing and drinking water....lots of it. Good luck Eric......Cally
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This has been a very interesting topic to follow. Thank you for starting it Charly. I want to also encourage people to share their Hep Stories http://www.hepmag.com/hep_stories.shtml (http://www.hepmag.com/hep_stories.shtml) It is another way we capture real life info. I am especially looking for stories from men and people who have completed the new treatments, regardless of outcome.
Thanks
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You made it Eric and I am anxiously waiting to hear good results! It's been a long, bumpy trail, especially for the 24 weekers.
Have fun at the wedding and then off to the water and the fish! We have had good Chinook fishing here already, which is really early. It usually doesn't kick in until Memorial day weekend or a bit later and they are catching them right in front of my house (1/4 mi away, up a hill). I feel fish fever coming on and my smoker is ready! Our King Salmon derby starts up this weekend, for 3 weekends in a row. It is always an exciting time for us.
Cally: I am about 10 weeks post too, and am getting some energy back. Glad to hear you are feeling better!
Lucinda: Thanks for the site and I will definitely check it out!
Hope everyone's week goes well!
Katie
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Regarding FDA approved drug/medical research and clinical trials: The models, methods and statistical analyses for these studies are the gold standard that all scientist try to emulate. You can be assured that the numbers reported in the clinical trials will mirror the real world numbers of the population studied.
This is because the research has to be replicated to confirm validity. Once a study has been replicated, and the same results are statistically confirmed, that research is valid.
The reason I point this out is that 90%+ of those completing a Harvoni protocol will be cured.
90%+, however, is not a 100% and there will be some who will fail treatment.
The important thing to remember is that there are new, more effective drugs coming down the pike.
Unlike the old days, when patients were warehoused for decades (I was warehoused for 15 years), the golden age of Hep-C treatment has arrived, and these new DAA are real game changers!
Best wishes, Mike
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Wow, that is pretty shocking. You would think Gilead (or someone) would be keeping tabs on us for years to come to find out if any long term problems arise.
I asked my doctor about that on Monday, "Is there any chance we are going to have some sort of problems down the road as a result of taking this treatment?", and she just shrugged.
I guess once the drug companies get their $1,000+ a pill, they don't really care what happens after that.
Not to be so negative - I am incredibly thankful for Harvoni right now - just hope there are no BAD surprises somewhere down the line!
Lee
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Thanks all for the encouragement. I hope that we all get our lives back. I had a liver transplant 10 years ago and had hoped that was the end of the hepc. But it was back in 6 mos. But with Harvoni its going to be different for all of us I hope. Being positive and sharing with each other, in my mind, is the most important thing for all of us.
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I managed to get my lab results 1 day before seeing the Dr.
3.5 wk undetected post treatment
16 weeks Harvoni
tx naive
Gt 1b
F4 fibrosure 12/14
3million vl 12/14
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Congrats 1234. I am happy for you! Keep up with the good habits for another 8 1/2 weeks!
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It's a beautiful day to do a Happy Dance for Sam, Mike and 007 and anyone else I may have missed! Congratulations to all who are on the road to a cure, and we all are hopeful that an even better treatment comes along quickly for those who haven't been as lucky, this time around.
Blessing to all
Katie
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Wow, that is pretty shocking. You would think Gilead (or someone) would be keeping tabs on us for years to come to find out if any long term problems arise.
I asked my doctor about that on Monday, "Is there any chance we are going to have some sort of problems down the road as a result of taking this treatment?", and she just shrugged.
I guess once the drug companies get their $1,000 a pill, they don't really care what happens after that.
Not to be so negative - I am incredibly thankful for Harvoni right now - just hope there are no BAD surprises somewhere down the line!
Lee
Lee I would not be concerned about long term problems with these medications. The reason is simple they do not modify or attach to anything other than HCV RNA. Certainly it can be said that while the medication is in the system some effects happen and there is a reaction to the functional levels in the metabolism of the liver and kidneys that can cause blood pressure changes. However there is absolutely no reason to assume these changes are permanent or dangerous long term.
The liver is truly amazing it reacts to substances in the blood and if the substance is not a useful component of the blood it discharges it.
I encourage you to learn and study the facts about what these meds are and how they work and are discharged by the system. The facts are all readily available on line including the chemistry details and all the relevant studies. One thing I will say about Gilead, they are very transparent in their approach to disclosure about their products they are not snake oil peddlers like some who push branded products for every little ache and pain a human has
My mother had a prescription written for her by our family doctor in early 1962 for morning sickness. It was pushed to him by a shady fly by night pharmaco that had political pull in Ottawa and did the usual kick back routine to keep the med on the list long after the med had been pulled in England in spring 1961.
Thank God we could not afford to fill it at the time, otherwise my sister might not be as healthy as she is! It was for thalidomide but under a trumped up brand name that sounded completely innocuous.
I carefully looked into the data before going on this med because at the time the approval was not finished yet and the other choice I was given and approved for was Solvaldi/Interferon for 24 weeks with the possibility of adding rib at 12 weeks if the VL level was still high.
After seeing the high incidence of relapses happening with genotype 1a tx experienced F4 patients with this treatment, I was very pleased when Harvoni received approval so quickly.
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4 week undetected, 12 week post treatment undetected, 12 weeks treatment, treatment experienced, genotype 1a, fibrosis 1.3 metavir, pre treatment viral load 2.800000 :)
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Super Mikee. Congradulations!
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Started Harvoni 8 week treatment on 12/29/14. 12 week EOT - Undetected! Yeah!!!
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Congrats Mikee and Valance.
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Hi all, I'd like to clarify some points of my post on 5/19 re: Gilead and post- treatment data collection. I in no way meant to insinuate that Gilead doesn't care about us now that they are making a profit, or that they are snake oil peddlers. I, too, have had plenty of time since my diagnosis in '11 to follow the development of HCV treatments, and read, read, read and ask lots of questions.The ION trials showed a very high rate of SVR and I believe this to be accurate data. But as Mike pointed out, the SVR rate is ~ 90+% per trial outcomes. It's that other +/- 10% that we still are learning about. I want this virus eradicated more than anything else, as there are so many of us infected world-wide..... I want my life back!! But we also need to be realistic and inquisitive when issues come up. The bradycardia medicine interaction w/Harvoni issue is a perfect example; there will likely be more drugs added to the "do not take w/Harvoni" list as time goes on. This is the learning curve we are still on, even with good, sound data from the studies.
I was surprised there is no requirement by the FDA for post-market followup and I wanted to share this with our community, in addition to pointing out the importance of this forum in providing resources and information that are not available elsewhere. I highly commend Charly8 for starting his "study" for us! And I also highly commend everyone, members and moderators alike, who are taking their personal time to support, educate & inform us about this virus, its effects and its destruction. I am grateful to be able to communicate my fears, questions, frustrations & information with the only group I've met who truly understand. I hope this clarifies what I tried to convey in that 5/19 post. Thanks, FT
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Hi all...I posted this on another thread before I realized that it's this thread that was designated for post treatment results..
I changed my sig. that gives more details....
My 4 week EOT labs were wonderful....got the results today..
Undetectable. Ast/Lft's haven't been this low since I was in my 20s...Thanks so much everyone for being here...!! I'll keep updating at the 8 and 12 week EOT...Best to all.
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@Katie
Hi Katie..I read your post up thread about people experiencing some serious problems after finishing Harvoni...is there a thread where people are posting about it?
I'd love to learn more....thanks. It sounds like you're feeling better--hooray!
Meg.
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Congratulations Mikee and Valance...thanks for letting us know. It gives those of us behind you much inspiration...
Meg.
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Meg fantastic!! Do something special for yourself it is important. Shoes if you have the yen or dollar or credit card LOL, chocolate whatever it does not matter. Heck if I get the news that I am UND at EOT next week I might even just go out and get a new fly reel.
Being on the 24 week tx has been a stretch and I am not even sure about my current liver panel from last month I requested it but never got it. It all means very little until I reach at least 6 months being free from this curse, IMO if you are F4 and have failed treatment in the past it is better not to get too upset if you do not reach SVR. So I am taking it one step at a time that way I can prepare for any news regardless of how things go. This disease has made me very pragmatic but I will never let it get me down again!
Eric
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Worried as hell... After 24 weeks of treatment, my EOT blood tests were weak. My ALT was still over the maximum (but only by 1 point...) and I still feel pinching in my liver. I'm expecting results for my VL 2 weeks after EOT in the coming days. Starting to be scared!
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Hello everyone. I just got some good news from my Dr. this morning. 12wks post treatment of 12wks of Harvoni, I am undetected. I am almost in disbelief after all the past failures! Everyone on this forum are truly warriors! Dr said I was cured. We will do another one in 6months for my benefit. I will continue to keep up with everyone's progress! All the best!
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Hi Eric and Mario
Thanks so much for your kind words and I am rooting for you to get SVR.......don't underestimate the power of this drug. I was sick with cold viruses, bacterial sinusitis, was not exercising---at all---and I still am undetected 4 weeks post treatment.
Harvoni, imo, did it all by itself with no help from my immune system.
Sending you healing thoughts and prayers. Please keep us posted.
@MarioI'm sorry to hear your liver is still pinching. Have you felt any improvement since before Harvoni tx? I think re: your lfts...I'm not surprised that someone like you with F4 to have normal liver enzymes even if your negative. Your liver is going to need some time to regenerate enough fresh and healthy cells to get you there...Hang in there and keep taking care of yourself....I changed nothing when coming off Harvoni---continued eating cleanly, no raw sugars except for a little xylitol in my organic decaf. Chicken, eggs...did it help? I don't know but I felt that doing everything in my control to keep me negative would prevent the guilt/remorse if I relapsed and had gone on a "foods that I miss and love" binge!
Best,,,Meg.
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Thanks Meg. I actually changed my diet naturally. Since starting the treatment, my habits have changed without me intervening... I used to eat like crap, pizzas, fried foods, etc... I was committing suicide at a slow pace! I wanted out of this disease one way or the other. This is the reason why I said I had no choice with going with Harvoni, I was slowly dying.
Since I started my treatment back in November, I started making healthy choices. Just last week my wife took a pizza at the restaurant and I asked to have a salad with goat cheese, nuts, and cranberries. My wife thought an alien had taken over me! I appreciate the smell of fresh tomatoes, green peppers, etc.. This is something that happened gradually over the last 6 months.
Although the 24 weeks treatment appears to punch through everything (Rav's, 282T, etc..) I might be worrying for nothing but, I want confirmation so my life can be based on something else than Hep C
Anyway, good luck to everyone and for the ones still on treatment, make sure to invest whatever amount of money necessary to purchase additional bottles of the product. Don't let administrative insurance pricks decide your treatment for you....
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Mario, We've all been on this journey together and are here for you. I had issues post treatment and still do AND I was detected at EOT, but cleared when I was tested at 7.5 weeks, so never give up hope.
You have been very faithful and doing all the right things so keep a positive attitude. At EOT I had and "ache" in my liver area, which also could have been my gallbladder, but it is gone now. Totally gone for well over a month! Things slowly are improving but I still have a very low energy level and endurance is not there. Part of this is from the long daylight hours as it messes with my sleep cycle and that may be more of my problem than the treatment. I like to think that is really what's going on.
We all get nervous and scared during the waiting period, and my imagination went off on it's own. When I came back detected I was bummed but knew everything was SO much better and then we found the study on people clearing weeks after treatment ended so I became positive again and I DID clear. Amazing!! My next test is the end of June so the doubts will more than likely creep in again but each time it gets easier.
We are all here for you!
Katie
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Hurray Meg! I'm doing my Happy Dance for you!!!!
Great news on all of your results!
Here is the thread on the side effects post treatment. Hopefully you don't have any but it helps to know you aren't alone if you do. (scroll through the comments)
http://forums.hepmag.com/index.php?topic=2053.new;topicseen#new
After thinking about my lack of energy and having no endurance, I am starting to blame it on the long daylight hours as it really messes with my sleep cycle. I have a feeling that is the real culprit and small subtle changes are still occurring and they are all positive!
Welcome to the waiting train and try not to focus on it; just enjoy the beautiful summer and each and every day!
Katie
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Worried as hell... After 24 weeks of treatment, my EOT blood tests were weak. My ALT was still over the maximum (but only by 1 point...) and I still feel pinching in my liver. I'm expecting results for my VL 2 weeks after EOT in the coming days. Starting to be scared!
Ditto. However this time around at least there are more treatment options coming down the pipe fairly soon, hopefully they won't be 1000 bucks a day for 24 weeks. But with Gilead paying 11 billion for the rights to sofosbuvir I doubt that they will be less expensive than Harvoni except for one that I have heard about that is not being done by Gilead or Abbey or Lily. The problem of costs also happens to any of the companies using methods associated to Lily and a few other mega corps that hold a swack of process patents.
You can bet that any new company that comes up with a miracle pill will just be bought up by one of the major players so I would not count on a reasonable cost for the new meds happening. But enough politics.
I will ask my GI if he is involved in any clinical trials this time around...But if it gets in the way of fishing this year it might be a hard choice! At least this time around I am not moping and weak and in need of steroid shots and morphine just so I can walk and bend over like I was in 2005 after the first go round treating this curse. The last thing I want is to go back to using a cane or worse only be able to fish from a boat!
Keep your stick on the ice Mario eventually Toronto or Montreal will win the cup!
All bets are off with Vancouver though knowing the management there their answer will be to go out and trade for something like the Hanson brothers just to keep the stands packed the blood on the ice and the TV ratings up! :'(
Greetings
Eric
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@Mario
Just last week my wife took a pizza at the restaurant and I asked to have a salad with goat cheese, nuts, and cranberries. My wife thought an alien had taken over me! I appreciate the smell of fresh tomatoes, green peppers, etc.. This is something that happened gradually over the last 6 months.
Haha, I was shocked when I began craving veggies. It's cheese I am most craving these days. Because it's fattening and some say dairy causes inflammation, I've cut it out of my diet. Just today at Costco when I walked down the cheese aisle....sighing...
Hang in there. It's so hard not to think about it because it is important--- but the truth is that this moment is all we really have. This moment that I'm choosing to write back to you. The moment you are reading this. That's it. I could have a heart attack in a few moments...My husband died too early from cancer. I can honestly say that I lived my life most to the fullest during his final year. Indeed, I've continued to give it my best but I get off track more often than I'd like.
I hope the weather where you are is cheer-inspiring, Mario Seeing the initial flowers blooming and watching the bees delight in their nectar has been particularly joyful for me this year...
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@Katie Thanks so much for dancing with me!! It's pretty surreal because I moved to where I am living now last year and only 2 people here know that I have hepC. Yesterday I got together with a friend who doesn't know and it was weird to not be able to share this joy....
Thanks for the link...the tinnitus is most notable for me. As you know, I was exhausted, sick throughout treatment and that is slowly getting better as viral season is passing.
Ahh--the long daylite hours. I keep forgetting. Do you used black-out shades? As someone who hasn't experienced such long days, it's a reason I'd someday come to Alaska in July but I imagine living it from year to year could be a challenge. Too much of a good thing! How do the flowers do?
I'm so happy you are still around and giving all of us so much knowledge and support----thanks so very much, Katie.
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Congrats Meg, so happy for you! The monsters you've been battling since your early teens are finally gone. You. Beat. Them. Way to go!
Bob
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Bob!!! There you are! So nice to "see" you. Yes---they hung on for dear life until Harvoni the giro-terminator came along.;-)
When is your 4 EOT date?
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Bob!!! There you are! So nice to "see" you. Yes---they hung on for dear life until Harvoni the giro-terminator came along.;-)
When is your 4 EOT date?
Next Friday, 6:30 AM I get my 4 week post treatment blood test. Every other time they have posted liver enzyme tests by 10 AM and VL results by 8 or 9 PM all same day. Of course, this probably will be the time they delay!
I haven't had much time to ponder my VL. Last Thursday I had dental surgery (ouch!) and quite a bit of travel, including next week. I'm riding a lot this weekend. Tonight is a night mountain bike ride in McDowell Mtn Regional Park east of Phoenix. About 100 of us will wait until dark, strap on lights, and bash around the desert for a couple hours. The weather here remains spectacular, i.e., unseasonably cool. But the oven will come on soon.
Hope you are gradually getting your strength back and can get rolling soon. Looking forward to your 12 week post test results. I'm sure you have killed the monster for good!
Bob
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Request Kate101
1. 4wk - 12 wk EOT VL status 6wk - undetected
2. Treatment duration 12 weeks
3. tx naive or experienced exp
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status (date) F2
6. Initial VL (date) 1.5 mil
Headaches and fatigue plus many others. Not unbearable but add everything together and it has been a bumpy ride. Cant wait to feel Great again but mental state in much better ;D
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Here's my Happy Dance for you Kate!!!! I've been waiting to hear from you and am Happy tonight! Congratulations on being victorious! May your strength and health improve quickly!
Katie
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I am asking this question for my husband. He has finished his 12 weeks and his number was under 12 but still 'detectable'. He jus had his 6 weeks blood work and his AST and ALT numbers have gone back up. We can't seem to find any info on what this might mean and the doctor won't do the test for Viral load until 3 months Post Treatment. Has this happened to anyone else? We want to know so we can move forward with more treatment if necessary and we are both very scared.
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Order a VL test and pay it yourself if needed. You should know what is going on right away. The unfortunate news is that retreatment at this time doesn't have as much success. If his hep c under control, he should wait next year for retreatment (my opinion)
I'm in the same boat, waiting for confirmation...
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Thanks for the quick response. Does anyone know if it is not unusual to have higher ALT and AST but still be undectable after 3 months?
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Hi
These meds are very new so not a lot of info. Could be different things could cause an increase in ALT/AST maybe just the removal of Harvoni.
When you said his numbers went back up by how much have they gone out of normal range?
You asked your doctor to do a viral load and they refused to consider it? That is unfortunate on their part. At least to see what is going on with the liver tests.
Has your husband treated before and does he have cirrhosis?
Best of luck to you both
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Thanks Lynn. The numbers were 190 and 108 and the Ferritin was 605. This is his first treatment and he was border line cirrhosis as last test. I'm not sure if this is right but I believe it was 11 and he was told 12 was the beginning.
He just turned 58 and we're not sure when it was contracted but suspect the early 70's.
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Lynn K. Your approach is much better than mine! Get more information before talking, it's not always my best quality...
On another subject, I just received my VL2. I am still Undetectable!! I know 2 weeks is not much but it is aiming in the right direction! I am not doing a Happy dance, only a few happy steps!!
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That's great news! I wish you all the best and thanks again for responding. It takes some of the sting out to be able to talk to someone even though I'm not the one with the disease. We've been together 42 years, hard not to worry.
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My ALT/AST have always been while not treating around 60 give or take never seen them above 100 any time since diagnosed in 1990. I have never had my ferritin level checked but I think high iron can also cause problems for the liver as well as having a high BMI of he has some weight issues.
So it looks like he could have other factors that can effect his liver in addition to the hep c.
Not familiar with the numbers 11 and 12 was that a fibrosure blood test or something? I haven't had that one. My cirrhosis was diagnosed in Jan 2008 by liver biopsy.
I am 57 and likely got Hep c in 1978 while stationed in Germany when I was in the Army.
I would ask his doctor for their thoughts about his tests.
Good luck
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Great news Mario!!!!
I did not have a week 2 post test but will be having my 4 week post tx test on June 1 so in one week hope to know by June 7th or hopefully sooner.
What day did you finish treatment I remember we were close my date was May 4th
Congrats and happy dance for you!
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My last pill was on April 27. I did find the treatment hard towards the end, 24 weeks is long...
Originally, my doctor wanted only a 24 weeks test so as to save costs (Canada). I argued, pleaded, would have cried if required and got him to give me a test during my doctor's appointment (2 weeks post). I also received a order for a test whenever I want (12 weeks?). Finally, the hospital screwed up and called me this morning for another VL test which will be 4 weeks post treatment!! God does work in mysterious ways....
Best of luck with your test
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Lynn K. Your approach is much better than mine! Get more information before talking, it's not always my best quality...
On another subject, I just received my VL2. I am still Undetectable!! I know 2 weeks is not much but it is aiming in the right direction! I am not doing a Happy dance, only a few happy steps!!
Mario I am very happy you have the word and it is the good one! I am still sitting here on pins and needles! My doctor as well is just doing HCV RNA and the clinic seems to be tight lipped about my liver panel and has not returned my calls yet so I am sweating it to say the least, they must be busy as hell is the only explanation I can fathom.
If you are Italian go and get a nica spumoni and biscotti witha espresso and damn the torpedoes! A little sugar ain't gonna hurt.
Best news I have heard seeing that you are in a very similar boat to my situation!
eric
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Lynn K. Your approach is much better than mine! Get more information before talking, it's not always my best quality...
On another subject, I just received my VL2. I am still Undetectable!! I know 2 weeks is not much but it is aiming in the right direction! I am not doing a Happy dance, only a few happy steps!!
I am doing a Happy dance for you Mario! You are well on your way and I just know, you've defeated the alien monster! Spoil yourself in some little way and enjoy the good news.
Katie
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@Mario Wooo-hooooo! Yours was the first post I saw when I logged in....it's a sign of good news continuing!
How fun that your doc's office mess-up is working out to do a 4 week VL...there are no coincidences?
Stay Undetectable!
Meg
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Bob(bitumen), I'll be thinking of you on Friday. We began fairly close together..
Another chapter to close, sealed shut, forever...
Thanks for your good wishes. Indeed, since the w/e, it's like a switch went on and my body feels much better. I may even be able to take a gentle bike ride this week...
Stay active and healthy, Meg
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@Eric(mugwump)
My doctor as well is just doing HCV RNA and the clinic seems to be tight lipped about my liver panel and has not returned my calls yet so I am sweating it to say the least, they must be busy as hell is the only explanation I can fathom.
Eric, I'm sorry. I can't recall if you've already had your 4 week EOT VL? What's making them keep tight lipped about the liver panel.
I hope you get answers soon, now that the holiday is over...keep us posted. Sending you positive and healing thoughts. The wait is so hard....
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HCVDX30
1. 4wk UNDETECTED - 12 wk EOT VL status UNDETECTED
2. 12 WK Treatment (HARVONI) duration 10-22-2014 TO 01-13-2015
3. tx naive or experienced NAIVE
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status F-4 (CIRRHOSIS) 08-15-2013 LIVER BIOPSY
6. Initial VL 6.38 LOG 10 RESULT 07-24-2014
DX 1995 HCV exposed 1971. Currently all Liver Function Tests are normal as of 04-21-2015. Age 67.
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HCVDX30
Congratulations!
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@Eric(mugwump)
Eric, I'm sorry. I can't recall if you've already had your 4 week EOT VL? What's making them keep tight lipped about the liver panel.
I hope you get answers soon, now that the holiday is over...keep us posted. Sending you positive and healing thoughts. The wait is so hard....
I got my panel results today and they are normal but climbing a little since March. Both in the low 40s and no excess iron load. The problem is the only lab here in bc that does HCV RNA has a bad case of indigestion so the magic UND at EOT is delayed until next week some time but my clinic nurse and I both think there is no reason that 24 weeks of treatment should not have cleared me.
I don't care like I said on another thread, where I am going fishing there is no cell service and even if I still can't get the magic word by then I am going to spend some quality time away from civilization come hell or high water! Low alt is not a good thing either it is a natural function of the liver to exchange cells and my BP, renal functions and all the other stuff that gets wacked by cirrhosis are all perfectly normal. So is my TSH, the tinnitus is backing down, no headaches and I am playing and studying very difficult classical guitar pieces just fine.
I just worked stripping and waxing floors for 6 hours and I am not feeling too bad. Before I went on treatment there is absolutely no way I could have worked in fact I was starting to have to use a cane again because of weakness in my legs. I was also starting to get nervous about driving a vehicle because of the debilitating aspects of cirrhosis my thinking was being effected and I was tired all the time!
So I still have all my toes and fingers crossed but I will not allow my self to feel certain until a 24 and then a 52 week UND comes in. I don't trust those little beasts they have a way of hiding in the body.
Thanks for the encouragement
Eric
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Mugwump. Happy to see other 24 weekers who are finished with their treatment. What date was your last pill?
Your doctor is right in telling you that 24 weeks blow all cases 99% of the time. The only negative note on this was an article suggested to me by Lynn K. It states that people with heavily compromised livers (advanced cirrhosis) only have 85% chances of clearing the virus. It was sobering!
My side effects are slowly receding.
Good luck to you with your upcoming results!
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Just got a return call from my nurse after I left a message asking if my 12 week vl post tx came in. She left a message saying "my test results are normal" which I do believe means UNDETECTED. I've tried to call her back several times to just confirm and hear the words "you are cured", I guess I'm in disbelief. I should have a note sometime from my doctor today, hopefully it will sink in!
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Nicole that's wonderful news. I pray and hope I'm in your shoes too. 4 more weeks of treatment and then 12 weeks of the waiting game.
How are you feeling? Do you feel any different?
Deb
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Deb, praying for you too! Yes I'm feeling pretty great. Most symptoms are gone I think from tx and hep c. I don't have those crashing waves of tiredness anymore. But I do think my liver has some healing to do.
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YAY Nicole!!!! So glad to hear of your results and that you are feeling good! I had a 8 week test so they wanted to wait for a 16 week, which is the end of June. This was becauyse I was detected at EOT however UND at 8 weeks. I think we have this girlfriend however, I am not truly celebrating until SVR24 is reached.
Have a wonderful, healthy, rest of your life and take care of yourself!
Katie
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Thanks Katie! It's so amazing you are UND 8weeks after being detected at EOT. I'm so relieved and happy for you. Also I asked my doctor why a few people were clear at 12 week post on Solvaldi/Olysio and then relapsed at 24weeks and she assured me Harvoni is completely different and not to worry. So like you I will feel the best at 24week but I'm going to be pretty confident these next 12 weeks that this worked. You should be too you are at 99% right now!
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I hear you Nicole. My doctor wasn't aware that could happen either and the entire office staff was cheering! Comes to be, 3 of us were detected but not countable at EOT and all three of us cleared after 8-12 weeks. I think there were fragments of non viable virus particles still floating around. Just my guess, but we are seeing relapses with some who appeared to clear as early as 4 weeks into treatment. Hard to make sense of it so we will just wait and see. I still am tired and don't have much endurance, but I really think it has more to do with the long daylight this time of year. I sleep really good but just not long enough!
It's always good hearing from you so keep us posted and I'll be thinking of you!
Katie
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Mugwump. Happy to see other 24 weekers who are finished with their treatment. What date was your last pill?
Your doctor is right in telling you that 24 weeks blow all cases 99% of the time. The only negative note on this was an article suggested to me by Lynn K. It states that people with heavily compromised livers (advanced cirrhosis) only have 85% chances of clearing the virus. It was sobering!
My side effects are slowly receding.
Good luck to you with your upcoming results!
It is because Harvoni was approved before the clinical trial 24 week tx long term SVR result finals were in. Still one hell of a better option than a Peg/Solvoldi routine. I will take 85% any day of the week in Vegas! Besides the side effects were a cakewalk and I am much better off than I was before TX to say the least.
So even if it comes up snake eyes again for me, I will still sing and play and most importantly fish and write. However I will limit work stripping floors and hard night time work to what and when I am capable of doing instead of working my brains out cooking and doing advanced janitorial the way I did when I recovered from the last treatment. Finding work ain't an issue for me to say the least. That is why I shot my contract then drowned my cell phone I guess, I put cell phones and contracts on about the same level as a famous mystic in Russia that they had to shoot and then drown to get rid of!
If I do not reach SVR life ain't over I will just get even and finish writing a satire musical comedy about the cold war that I have been working on for about 15 years. I am looking for a decent librettist to collaborate with but they all seem to be dead like Emanuel Schikaneder (http://en.wikipedia.org/wiki/The_Magic_Flute) or otherwise occupied. Many who write music have a difficulty finding song writers so I have to do it myself. The musical score is not the problem the libretto is however.
All the best Mario, I took the last pill last Tuesday and had blood drawn the next day so the wait is up over 10 days now for HCV RNA results in BC another pain the butt side effect of Harvoni treatment I would guess??
Eric
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EOT tests are not terribly informative because of the wide range of results seen here (detectable at EOT but clears later, UND at EOT but relapse, etc). I just had a 4 weeks test yesterday and that one should be very interesting!
In New Brunswick the wait for results is a full 2 weeks also. Finally, I like your attitude with what the future holds for you. You are definitely easier going than me... Must be my accounting background where we seek certainty,or maybe I'm just a worrywart...
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The wait is because of a worldwide shortage of the test kits. I also had to wait 2 weeks for my 12 week post treatment Hcv RNA. But I was pretty happy with the results!
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So hear it is
Nicole_1234
1. 4wk UNDETECTED - 12 wk EOT VL status UNDETECTED
2. 12 WK Treatment (HARVONI) duration 12-03-2014 TO 02-25-2015
3. tx naive or experienced EXPERIENCED
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status: N/A NO RECENT TEST
6. Initial VL 650,000 Sept 2014
7. 12 week post UNDETECTED
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@Nicole It's so wonderful to see all your numbers looking perfect!
@Eric Your posts are so inspiring. You're a great writer and conveyor of your ideas...Write that book!
I wouldn't expect your liver to have low nor even mid-level ast/alt. It will take a while to heal.....In the meanwhile, enjoy your fishing and know that your posts inspire us....
Meg
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@Nicole It's so wonderful to see all your numbers looking perfect!
@Eric Your posts are so inspiring. You're a great writer and conveyor of your ideas...Write that book!
I wouldn't expect your liver to have low nor even mid-level ast/alt. It will take a while to heal.....In the meanwhile, enjoy your fishing and know that your posts inspire us....
Meg
My liver panel is in mid level low 40s. So it is fine again and churning away exchanging cells at an accelerated rate as it heals. Levels were down to the mid to high twenties at week 4 and slowly came up as treatment progressed. But the reality is that my liver is large from cirrhosis and my muscle mass is very large compared to most individuals. Not to say there ain't no fat associated with my 100 kilos on a big bone 175 cm frame, but there is more muscle than fat. I am built like a low land gorilla and can still climb up and out of some difficult canyons on some BC rivers where you have to do it on all fours!
I think I must be a reincarnated miniature grizzly or somethin' LOL
HMM I have a hankering to eat a nice smoke cooked west coast fish.. it should be on the menu again very soon. LOL Like this 4 lb plus beauty we fire cooked 2 years ago about this time of year! The video link on another thread was of another smaller one that I released a few days previous. This fish was not reviving very well so I decided it was time to eat one rather than feed it to an Osprey which is what usually happens on the rainbow trout lakes if a fish takes too long to recover and flops around for more than 10 minutes before it recovers. I have a video of a young but mature Bald Eagle being harassed by a nesting pair of Ospreys competing for fish on Heffley lake near Kamloops but it is huge and takes too long to upload to the tube with a shaw cable connection that limits your your upload bandwith! Otherwise I would link it.
(https://lh4.googleusercontent.com/-fBIW7z-fZu8/UvLBjDJhGUI/AAAAAAAAAQE/LsYM5SqRdq0/w702-h395-no/nicefish.JPG)
That time on the pond we actually had a hard time finding fish small enough for the table and 3 of us to eat in one go. And I don't believe in feeding the real bears when I am in the bush like some crazy would be inexperienced anglers wind up doing, either intentionally or not if they keep too much fish hanging around camp. This can be a huge consideration when thinking about how you approach fishing and a real incentive to learn catch and release technique here in BC and in some places in the States for that matter.
Well enough for now and let us not get over concerned about our test results they can be very misleading and are not a death sentence by any means.
But it is wonderful to see the 12 week UNDs coming in and my spirit is lifted like an Eagle in the wind when I see others reach these important milestones!
Eric
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Hi. I am reading this and very scared. I am still on treatment. 8 weeks Harvoni. Self paying. I thought I bought a 99% cure and with all the relapse on 8 weeks course I am feeling down. I feet the criteria for 8 weeks course and very scared of relapse.
Initial load 700 000 IU. Treatment naiv. F0 A0-1. Recently diagnosed. Geno 1b.
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Hi. I am reading this and very scared. I am still on treatment. 8 weeks Harvoni. Self paying. I thought I bought a 99% cure and with all the relapse on 8 weeks course I am feeling down. I feet the criteria for 8 weeks course and very scared of relapse.
Initial load 700 000 IU. Treatment naiv. F0 A0-1. Recently diagnosed. Geno 1b.
Angelina, dont get thrown by these numbers reported in this thread. .I offer up these two posts from earlier in the thread from a forum moderator to ease your anxiety some:
http://forums.hepmag.com/index.php?topic=2665.msg21888#msg21888
http://forums.hepmag.com/index.php?topic=2665.msg21891#msg21891
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Angelina. I was supposed to self-pay my whole treatment and had reserved $85,000 Canadian dollars for 12 weeks. I was then told I'd have to go for a 24 weeks treatment which brought the total cost to $ 170,000. This is a ridiculously high price! So I thought: '' If my daughter needed the money for her health, How long would I hesitate to cure her?''. My children are all grown up, the house is paid so why not invest in the breadwinner? I was already at F4 and wanted a cure as close as possible to 100% because I would be hard pressed to try again later! My wife and I had a discussion and it was decided that all efforts should be put into my ''survival'. I was lucky, most of my costs were paid by insurance and Momentum but, the money was there if something got screwed up...
My advice is : ''A bit more medicine will not be harmful, a little bit less will cause me major problems''. Given the fact you're already deep into it, I would go for one extra bottle. No matter what happens next, you'll have done everything in your power when required. The Lord will handle the rest.... You could try to talk to your insurance company to know if they could pay for a bottle (deep discounts) and then sell it to you? What about Momentum for a ''special deal'' on the third bottle? I also had negotiated with the local pharmacy and was able to get a $2,000 discount per bottle; it's worth a try!
Good luck to you!
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I got my 12 week EOT results today - UND!
1. 4wk - UND / 12 wk - UND
2. Treatment duration - 12 weeks
3. tx naive
4. Genotype 1a
5. F3 fibrosis status - 11/21/2014
6. Initial VL - 313,593 11/21/2014
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Is there an updated tally?
Also, are there instances of UND post 4 week that subsequently relapsed? Just curious.
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Is there an updated tally?
Also, are there instances of UND post 4 week that subsequently relapsed? Just curious.
Sam, SVR4 is about 98.5% predictive of SVR!
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Angelina don't be too worried. You have a very low vl to start and healthy liver, also I heard somewhere 1b had a better rate of SVR than 1a. I would trust more the stats of Gilead trials than this forum, this is just a small group of people. Please remember a lot of people who are successful in treatment may not even report it.
And Roger congrats!!!! That's great news!
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Thank you all for your advice and support. My hope is also that 1b is less resistance than 1a. I read a lot about this and even according to the studies 1b relapse rates are much lover than 1a. Is there anyone with 1b here who relapsed???
Mario I appreciate your advice. The same thoughts started to visit me after this forum but the thing is that we only started the treatment as it was recommended only for 8 weeks despite doctors advice to wait if can't afford it now. But we thought its definitely a cure. We used our reserves and can't pay a third bottle at the moment, that's why I am scared. And now I am on the treatment already and no way back.
Congratulations to all who got SVR12!!!
And pls keep positive those who relapsed. You will all get cured from the next try!!!
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Hi Angelina,
Since you ask, I reply. I am 1b, diagnosed '92 after bl trans '80. I started 12wks 1-8-15 w/ a VL of 6.5mil., and F2-F4 Fibrosure score. I've been on a restricted diet and supplement protocol 22yrs and do all the liver healthy things, but despite UND at wk 4 and wk 12 of Harvoni, I had a VL of 510000 at 4wks after end of treatment.
I'm testing again in JUly for my 12wk EOT VL. I am also staying positive as all my LFT's and metabolic profile, and other labs and ultrasound are normal. Is what it is. Some relapse. Some with variants or polymorphisms relapse and some with variants don't. It's hard to predict or understand. I'm giving my liver a rest and considering other options for now.
My advice to you, is to stay positive and know most are curing or going UND on Harvoni. Best to you!!!!
June
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Thank you June. What is polymorphism? I read so much new stuff in the forum like some special genes that makes it harder to cure. Is it one of this genes?
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I don't have a med background Angelina, but yes, I'm just referring to the variants ... funny thing about the genetic variants is that they do not seem to definitively determine outcome... it's all pretty confounding ....
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Hi angelina and welcome
Long answer for polymorphism
http://en.wikipedia.org/wiki/Polymorphism_%28biology%29
Short answer genetic variants of something in this case some of us for example carry the Q80K polymorphism which made us harder to be cured with the old treatments with telaprevir, Interferon, and Ribavirin.
However it seems that the new generation of medicines like Harvoni these varations do not seem to matter anymore and do not appear to have an effect on the outcome of treatment.
Have you seen any of the clinical trial data for the 8 week treatment results for your genotype 1b?
http://hcvadvocate.org/hepatitis/factsheets_pdf/GT1_Harvoni.pdf
For genotype 1b, without cirrhosis, who are treatment naive with pre-treatment viral load less than 6 million the result was 98% SVR for the 1a people it was 93%
You really have an excellent chance of being cured 98%
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Lynn thank you for the info. Clear now. And i looked into the data very precisely before starting treatment. I think out of 215 it was 43 with genotype 1b and 42 reached SVR12 with only 1 relapse. But here in the forum with real people numbers look very different. But lets hope for the best!
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Yes power of positive thinking most will cure!
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Finally got my 4 week SVR results!
Charly8
1. 4 wk post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx Experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Fibrosure- F3 (Dec 2014), Fibroscan F0-F1 (Mar 2015)
6. Initial VL (date) - 1.05 Mil (Dec 2014)
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Super! Charlie8. You appeared to be a fairly heavy case to be cured with only 12 weeks. I guess lots of people here will be encouraged by your results!
Harvoni sure works in mysterious ways!
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Super! Charlie8. You appeared to be a fairly heavy case to be cured with only 12 weeks. I guess lots of people here will be encouraged by your results!
Harvoni sure works in mysterious ways!
Mario, why do you say that? His latest test, the fibroscan, showed minimal damage, and his viral load is only 1mil. Looks like he's an ideal candidate for the 12 wk treatment according to Gilead prescribing info: Treatment-experienced without cirrhosis: 12 weeks
Charly, Congrats on SVR4!! Youre just about home :)
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Oupps. When I read his stats, I thought he was F3 from a fibroscan. It was fibrosure which I know nothing about! Being F3 on a fibroscan could easily be a F4 because of the higher difficulty in grading properly higher levels of the disease (from what I read here). Sorry for the poorly thought comment! I am still amazed at this new medication compared to what I went through before. I really can't wait to see Charly8 update. Anyway, I am happy for you Charly8. Hope to have similar news in 1 week (my VL4 results)
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Mario, Yea.. Its the variability and unreliability of these non invasive tests that keeps me from doing one. My biopsies have been good with the most recent one about 2 yrs ago. Id like to get an updated condition of my liver. Progression has been exceedingly slow for me and there's no real reason to be believe thats changed.. But being svr, Id rather not have another biopsy.. My doctor's office recently acquired a Fibroscan machine, but the last thing Id want is for the inherent inaccuracy of this machine to give me a higher staging than my biopsy did if its not accurate... I'll probably request one anyway since at the minimal and maximal ends of the scale is where it's accuracy is supposed to shine.
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I updated my signature. As of yesterday morning, 6:30 AM MST, four weeks post EOT, virus remains UNDETECTED and I feel fine.
Next milestone lab work is 29 July, which would be 12 weeks post treatment. Do we declare victory at 12 or 24 weeks? I can't seem to find it, but I recall a statistic that if you have a SVR at 12 weeks, then there is X percent that you will have a SVR at 24 weeks. What is that percentage? Is four week response predictive of anything? Anyway, I seem to have a good jump on a SVR.
Healing vibes to all.
Bob
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Bob, with Harvoni, SVR12 is 99.8% predictive of SVR! And SVR4 is 98.5% . Youre probably home free .
http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf
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Congrats, Bob! Excellent news. I have 5 more Harvoni pills to take. I will have EOT test done next Friday. Was still detected @ 8 wks, so keeping fingers crossed for UND at 12 wks & then SVR!
Karen
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@Bob
Congratulations. I'm delighted to come over here tonight and see your wonderful results.
Your wife and family must be thrilled with you...
All the best, Bob.
Meg.
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Thanks Dragonslayer, I figured you would help me out. I really appreciate the reasoned and scientific approach you have brought to this board.
Special EOT healing vibes to you Karen. Thanks to Dragonslayer and others, we now know that being detected at 8 weeks will probably still result in a SVR. Good luck on those last five pills. I think you're going to make it!
You're right Meg, my wife and others are real happy. I had the occasion to take a 30 minute drive with my company's COO and even he congratulated me! As you know, I wasn't shy about telling people I have hepatitis. I'm especially happy for you too. There's a common bond among those of us battled cancer as young adults and were left with another monster to face down. I have spotted a few others on this board with similar stories. Hope you are gradually feeling better and with more energy, and can get your knees in the breeze soon.
Continuing healing vibes to all!
Bob
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1. 4wk EOT VL status = UND
2. Treatment duration = 12 weeks Harvoni (Jan-Mar 2015)
3. Experienced
4. Genotype 1a
5. F1 fibrosis status (Jan 2015)
6. Initial VL 1.1million Dec 2014
Marnie
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@Bobz(Bitumen)
You're right Meg, my wife and others are real happy. I had the occasion to take a 30 minute drive with my company's COO and even he congratulated me! As you know, I wasn't shy about telling people I have hepatitis. I'm especially happy for you too. There's a common bond among those of us battled cancer as young adults and were left with another monster to face down. I have spotted a few others on this board with similar stories. Hope you are gradually feeling better and with more energy, and can get your knees in the breeze soon.
Indeed---that long nightmare is over....! May you continue to be blessed Bob...Meg
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As a follow up to a conversation I had with Charly8: My doctor started treating her first batch of 70 patients with Harvoni at the end of 2014, so they are now taking their 24 week labs. All 70 arrived at undetected by week 12, but today she told me only 1 of them has relapsed. So I guess it happens - there are some people with resistance. Luckily, there are new drugs on the way, so even for those, there is still hope.
Lee
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Congrats Bob
Hope to join you soon
Waiting to take my 4 week post treatment viral load right now will post results when I get them.
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As a follow up to a conversation I had with Charly8: My doctor started treating her first batch of 70 patients with Harvoni at the end of 2014, so they are now taking their 24 week labs. All 70 arrived at undetected by week 12, but today she told me only 1 of them has relapsed. So I guess it happens - there are some people with resistance. Luckily, there are new drugs on the way, so even for those, there is still hope.
Lee
Are you saying that she had a patient who was UND at 12 wks post treatment then relapsed before the 24 wk post treatment test? Or are you marking time from the beginning of treatment instead of the end??
On rereading, it sounds like youre marking time from the beginning of the treatment period.. So that when they all arrived at wk 12 Und, that would be their EOT test, and the 24 wk labs theyre now taking are really 12 wks post treatment in their SVR12 checkpoint....
The distinction is important because while its uncommon for an UND at EOT to relapse at 12 wks post treatment, its not nearly as uncommon as it is for someone who is UND at 12 wks post treatment (SVR12) to relapse by 24 wks post treatment.. The odds of that happening are well under 1%!
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Edit: contents not appropriate for this thread, sorry!
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As a follow up to a conversation I had with Charly8: My doctor started treating her first batch of 70 patients with Harvoni at the end of 2014, so they are now taking their 24 week labs. All 70 arrived at undetected by week 12, but today she told me only 1 of them has relapsed. So I guess it happens - there are some people with resistance. Luckily, there are new drugs on the way, so even for those, there is still hope.
Lee
Hi Lee as I read what you are saying what I think you mean is they tested UND at EOT 12 weeks and that this was their 12 week post EOT labs.
And as Paul said yes it is possible to be not detected at EOT12 but have relapsed at 12 weeks post treatment. Sadly we have one person on this list that would apply to.
Or as we are trying to figure out did you mean they had a patient who was not detected at 12 weeks after they completed treatment who relapsed at 24 weeks after completing treatment which that would be very huge news.
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Sorry...here is my info:
1. 4wk - 12 wk EOT VL status: 4WK VL: 20 AST 19 ALT 15
12 WK - VL - undetected AST 20 ALT 15
2. Treatment duration: 12 Weeks
3. tx naive or experienced: Experienced
4. Genotype (1a or 1b): 1a
5. F1-F4 fibrosis status (date): not known
6. Initial VL (date): Contracted in the 80's. Starting VL was 4.5 million
Hope this helps! And I hope I do not relapse!
Caroline
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Just a reminder of the original intent of the thread although of course we want to congratulate our friends who make SVR and celebrate being not detected on treatment
After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE!
Now that a lot of people are coming off treatment, we need a tally of peoples status.
NOTE: Please post only if you have results from post EOT tests SVR 4wk thru SVR 12wk after EOT.
Please list only SVR4 or SVR 12 status. No results on tx or at EOT because most are undetected then anyways.
Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk after EOT VL status
2. Treatment duration
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
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Hi guys, I've been busy the last couple of weeks and have not logged to the forum, sorry. I'll check back later to see how everyone else is doing.
Anyway, just got my 12wk post labs back, UND!
1. 4wk - 12 wk after EOT VL status : 12wk Post TX UND
2. Treatment duration: 12wks
3. tx naive or experienced: Experienced
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status (date): not done
6. Initial VL (date): Pre Tx 3.7m, dx early 90's
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Right on BOB!
I am hoping to hear some 24 week tx individuals chime in. But I guess there are not that many of us around yet.
My recent UND just today at EOT is a wonderful thing to hear though. I will not be going for a 4 week VL, Just liver panels until 12 week post treatment and that is the biggy for me so, as more people reach 12 week UND makes my day, week, year... OH what the heck this is FANFREAKIN' TASTIC!
ERIC
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AWESOME! I'm putting on my dancing shoes right now to do the HAPPY DANCE FOR BOTH OF YOU!
Do something special for yourselves and be filled with JOY! I know there is still some more waiting and tests to be done, but it is a huge step towards permanently eliminating this alien monster and having a healthy life.
I am SO happy for both of you!
Katie
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Eric and Katie
Thanks
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LynnK
Is #6 pre treatment VL or back when first dx?
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I didn't set up the original list but I am assuming most recent before treatment would be most relevant viral load
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Bituman
Congrats Bob.
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Thanks Lynn
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And oh yes where are my manners
CONGRATS BOB FANTASTIC NEWS!!
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Lynn
Lol, thanks.
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Hi All,
Well I just got the great news that I am SVR4; all other numbers look great and my doc says I am at 99.8% which means he has declared me cured but I will be getting the SVR12 test the end of July.
Now I am dealing with the awful RA like symptoms that hit me about 8 weeks into treatment. I am seeing a Rheumotologist but most mornings it is taking me 2-3 hours to be able to use my hands normally and having lots of other pain in my lower back and hips. It's all good, I will beat this crap too!
Hope you are all well,
Mel
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BattleTheBeast
YAY! Mel :)
Sorry about the RA :(
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Hi Mel
Alright SVR4 fantastic news!
I think I have read SVR4 is 98.5% and SVR12 is 99.8% but it's all good either way!
I just did my 4 week post test I have my liver functions back and they are still normal. When I relapsed last year on S/O my liver tests ALT was again above normal. So far so good. Should have my viral load back soon.
Sorry to hear about your continuing trouble with RA yes you will beat this crap too!
Battle on warrior Mel!
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It's been a while since I was here last. I just finished 12 weeks of Harvoni and my blood work came back detected. I was given twelve weeks treatment. I have cirrhosis but was treatment naive hence the twelve weeks.
My doctor says that's it, nothing else can be done. I'm pretty bummed about all this as I was very happy to finally get treatment and was undetected at 4 weeks. My viral load after 12 weeks is low at 120, but it is still there. Having a difficult time processing all of this.
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It's been a while since I was here last. I just finished 12 weeks of Harvoni and my blood work came back detected. I was given twelve weeks treatment. I have cirrhosis but was treatment naive hence the twelve weeks.
My doctor says that's it, nothing else can be done. I'm pretty bummed about all this as I was very happy to finally get treatment and was undetected at 4 weeks. My viral load after 12 weeks is low at 120, but it is still there. Having a difficult time processing all of this.
While not as low as some others, its not high either, and there are several instances of low detected viral loads at EOT resolving to SVR at 12 wks post treatment. Find the threads here on this for support.. Dont count yourself out quite yet. Besides, even if it does not clear by 12 wks post, the newer drugs coming on line soon look to be even more effective, so its definitely not over for you.
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TerryLF
Sorry about the lab result and I would have a hard time processing that too. But I'm with Paul don't count yourself out yet and yes there's some newer, better drugs coming soon.
Again Sorry, Bob
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Hi Terry sorry about you news really a bummer hugs to you.
Was that your EOT test after just finishing treatment?
Or was that a 12 week after treatment had ended?
Like Paul and Bob said you may not be out of the fight just yet. And there are newer treatments coming soon as well so don't give up!
Hugs to you
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Helen, 4 weeks post Harvoni 24 week program UNDETECTED
Ma
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Yay Ma, congrats!
Sorry Helen :)
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Yay for Helen !!!
Congrats to you both!
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Thanks to the people who responded to my comment. For Lynn, it was my end of treatment test. I was hoping maybe there could possibly be some residual RNA or something like that that my body just hadn't cleared yet, I don't know. My doctor just told me to come back in six months to monitor my liver processes. My real problem is that my coverage is through the state of Illinois Medicaid, I am able to work, but am limited physically (not from HepC, but other physical problems) so I can't work a lot. The state of Illinois only pays for treatment once and you're done. I have filed for disability, and if that is approved, I may have a shot with Medicare. Who knows.
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Terry, please check this site out. There have been 3 of us test Detected at EOT and have gone on to clear. I suggest you have another VL test at 12 weeks to see if this is what is happening.
http://forums.hepmag.com/index.php?topic=2383.0
These articles would be good to share with your doctor.
http://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html
http://www.hivandhepatitis.com/hcv-basic-science/5160-croi-2015-hcv-viral-load-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy
Good luck to you. It is so frightening when you get this news and I know what you are going through, but it could be that you will clear. Keep us informed as we all learn from each other and can help others. This drug is so new, many doctors do not know all of the latest findings.
Katie
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Thanks Katie. I read the articles and I will bring this to the doctor's attention. This gives me something to hope for. I was surprised that I tested positive at EOT since I was undetected at four weeks.
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Evidently being undetected during treatment is common however even at EOT it isn't anything more than stating you were a strong responder AND it depends on the sensitivity of the test as well. The test at post 12 is what counts and that's why it is the important one and actually could be the only one they test in the future.
When I first read these article which came out after my disappointing results, I became very excited...cautious but excited and it worked out for me! I was VL = 59 at 4 weeks and detected < 15 IU/mL at EOT so at 8 weeks post treatment my doctor tested again and I was Undetected VL = 0. I still will remain cautious until I have my SVR 24 and then will feel confident that I am cleared!
Hang in there. You are not alone!
Katie
ps: This thread is primarily for those who have tested post treatment at week 4 & 12 so it probably would be good to use the other forum for future comments. :D
http://forums.hepmag.com/index.php?topic=2383.0
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Greetings!
Cate here. I've only posted a couple times. Thank you for this compilation. It's been interesting to watch the results come in.
Here are my 4 week EOT results that I received this evening.
1. 4wk: UND
2. Treatment duration: 20 weeks. I was originally scheduled for 12 but I was a slow responder and still detected slightly at week 8 but UND at week 12. I was able to get approval for 2 more months of Harvoni from insurance, thankfully.
3. Tx Naive
4. Genotype: 1a
5. F1-F4 fibrosis status: Ultrasound and Fibroscan before treatment start date (12/16/14) indicated early cirrhosis.
6. Initial VL: 2.5 mil at pre-treatment physical about three weeks before I started treatment.
My doctor would like me tested again in 4 weeks so I will post again.
Sending kindness and hope to all of you.
Cate
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Helen, 4 weeks post Harvoni 24 week program UNDETECTED
Ma
So Happy to hear this news!! Congratulations!!
Mel
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Greetings!
Cate here. I've only posted a couple times. Thank you for this compilation. It's been interesting to watch the results come in.
Here are my 4 week EOT results that I received this evening.
1. 4wk: UND
2. Treatment duration: 20 weeks. I was originally scheduled for 12 but I was a slow responder and still detected slightly at week 8 but UND at week 12. I was able to get approval for 2 more months of Harvoni from insurance, thankfully.
3. Tx Naive
4. Genotype: 1a
5. F1-F4 fibrosis status: Ultrasound and Fibroscan before treatment start date (12/16/14) indicated early cirrhosis.
6. Initial VL: 2.5 mil at pre-treatment physical about three weeks before I started treatment.
My doctor would like me tested again in 4 weeks so I will post again.
Sending kindness and hope to all of you.
Cate
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Cate, first congrats on your UND results.
Your 20wk treatment got my attention, my brother was still positive at week 9 or 10 and his doc's, he has several, tried to get approve for addition weeks but he was denied. Several months ago I had a thread on this subject. My thing was just add 28 more doses after positive lab result but for most people it's not going to be approved. This hit home with several posters and at the time it looked like a no-brainer. I still think this "might" be a good way to go but looking at some of new data, people are positive at EOT but are negative several weeks later. So from a $$$$ point of view I can see why people are denied. My bro was UND at EOT but I'm still waiting to hear on his 12wk results.
Again,congrats, Bob
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Hi Bob,
I believe it was my doctor's letter to the insurance company that sealed the additional 2 months of Harvoni. There isn't much research about "slow responders" and the insurance companies follow protocol from what the FDA and Medicare recommend. My doctor informed the insurance company that I have early-stage cirrhosis, I am 62, and that re-treating and God forbid a liver transplant would be much costlier than an extension of the current meds. She actually broke down the costs in her letter. She is just amazing!
But I'm not out of the woods yet. According to the Harvoni researchers, I've a 5% chance of relapse between now and my 12-week EOT mark.
Kind regards,
cate
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But I'm not out of the woods yet. According to the Harvoni researchers, I've a 5% chance of relapse between now and my 12-week EOT mark.
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That stat seems a little high but what do I know..lol. Sending good vibes your way.
Bob
Ok just remembered 4wk result so maybe 5% but let's not go there :)
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Hi Bob/all,
I checked back with the HCV researcher to make sure I had quoted accurate information regarding the 5% relapse rate EOT between weeks 4 and 12. (The doctor I'm quoting has been an HCV researcher at Duke for quite some time.)
Here's the text I received from him, verbatim. My post about 5% was not quite right - he's stating that there's 5% relapse between last pill and week 4 EOT.
"Only about 5% relapse, of those 5%, about 98% relapse by week 4, thus only 2-3% or chance of 1 in 30 to 1 in 50 that the virus would come back."
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Bob/Cate,
What were these EOT viral loads youre speaking about? Were they low value detected or high? You know that many low detecteds at EOT go on to resolve at 12 wks post treatment... On treatment testing for most with Harvoni isnt real instructive or predictive.
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If I can put my grain of salt... What is being said is that 95% of people will be cured with Harvoni. For the 5% who don't, most of them will relapse by week 4 after the end of treatment (98% of the 5 %). The other 2% will relapse between week 4 and 12 (except for rare cases like Lynn K who relapsed way later). So, If you clear the 4 week mark, chances are high you will be cured for good.
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Just to be clear, Lynn wasn't on Harvoni when she relapsed. She just finished her Harvoni treatment.
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Mario, yes, your summary regarding the end of treatment statistics noted below are accurate:
"What is being said is that 95% of people will be cured with Harvoni. For the 5% who don't, most of them will relapse by week 4 after the end of treatment (98% of the 5 %). The other 2% will relapse between week 4 and 12 So, If you clear the 4 week mark, chances are high you will be cured for good."
cate
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I feel like a Harvoni success stat and should be added to the numbers. The catch is my dr waived off my SVR4 test as unnessary.
All requested info is in my signature. And further awesomeness of signature is that updated info changes in my signature. I won't have to clutter the thread with another post.
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And I was not tested at 4 weeks post Sovaldi Olysio I was only tested at 12 weeks post EOT.
I no idea when I relapsed in relation to my EOT.
We were only going to test at 12 weeks again this time but I asked if we could do a 4 week post EOT Harvoni. I have my liver function back so far so good still in notmal range but the did increase a bit.
6/4/15
ALT (GPT) <33 U/L 26
AST(GOT) 0 - 40 U/L 28
from EOT 5/4/15
ALT (GPT) <33 U/L 21
AST(GOT) 0 - 40 U/L 20
this was my relapse S/O test so prior to Harvoni 9/3/14
ALT (GPT) <33 U/L 56
AST(GOT) 0 - 50 U/L 45 (different ref range)
Waiting for week 4 post viral load results.......
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Ok its been a while and we now have a lot more responses!
Updated Stats for the 16 following member responses (ALL UNDETECTED):
007Guy (SVR4, 12wk)
Mike Conwell (SVR4, 12wk)
Sam1224 (SVR3.5, 16wk)
Valance (SVR12, 8wk)
MEG (SVR4, 12wk)
Workingonit (SVR12, 12wk)
Kate101 (SVR6, 12wk)
HCVDX30 (SVR12, 12wk)
Roger (SVR12, 12wk)
Charly8 (SVR4, 12wk)
Bituman (SVR4, 12wk)
Marnie (SVR4, 12WK)
BOB V (SV412, 12WK)
BattleTheBeast (SVR, 12WK)
Ma Snart (SVR4, 24WK)
Cate (SVR4, 20wk)
Mario555, I did not include your SVR2 in the tally because it is still early and there is not a lot of data regarding tests that early.
So far nobody has reported a SVR4 and then subsequently relapsed.
Current Status
We have 40 people that hit at least the 4 week post tx mark. 7 of 40 have relapsed. (17.5%)
Breakdown by treatments
8 weeks of tx - 4 of 8 have relapsed (50%)
12-24 weeks of tx- 3 of 32 have relapsed (9.38%)
Note: We currently have a 17.5% relapse rate. This is with very limited data and certainly not scientific. Note: This poll probably skews towards relapse as people that get SVR results are more likely to have moved on with their lives and not reported back to the forum.
The latest results are all GOOD NEWS with no additional relapses. Now that more people have reported results, the 12 week treatment people are starting to align more with the Gilead's results of <5% relapse rates.
I am surprised that there have not been more responses for the 8 week treatment people. Remember if you are doing 8 weeks this tally is not scientific and does not mean that you have a high relapse rate.
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Thanks Katie. I read the articles and I will bring this to the doctor's attention. This gives me something to hope for. I was surprised that I tested positive at EOT since I was undetected at four weeks.
Terry, another person has posted where the VL doubled at EOT and they tested at 4 weeks post tx and got an UD. You definitely need to be tested again. Anyone else who relapsed might want to go in for more bloodwork. I have a feeling some of our 8 week relapsed folks may benefit from this.
Katie
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Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1
6. Initial VL (date) 7,200,000
(with complications of heart and lungs post treatment)
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Just got blood results from 4 w EOT. Undetected. My doc was out and they did not send all the results but it is great news so far.
I have noticed some small things that are better but it seems as though I am way out of shape because I do some hard work and I am sore and getting more sore.
This news makes me feel much better. Now back to work.
Good luck to all. There is hope
1a viral load at tx 960,000
Biopsy about 5 years ago diagnosed
Probably have had since early 80's
Null responder inter and riba
Relapsed telaprivir riba inter
Alt Ast in the 100 range
Undetected at 4weeks tx
Alt Ast in the normal range
Treatment 12 weeks
Harvoni and ribaviri
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Just got my 4 week post treatment viral load results
1. 4wk after EOT VL status: NOT DETECTED
2. Treatment duration: 5th treatment 11/14 to 5/15, Harvoni 24 weeks, Ribavirin 15 weeks
3. tx naive or experienced: Experienced
4. Genotype: 1a
5. F1-F4 fibrosis status: F4 Cirrhosis 01/08 Biopsy
6. Initial VL: September 2014 (after relapsing 12 weeks post Sovaldi Olysio)
HCV RNA RT-PCR, QT 2422260
HCV LOG 10 6.384
Wow!
Oh happy day Junkyard!
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Lynn!!!! You Just made my Day! OMG girlfriend a very special HAPPY DANCE for you!!
Congratulations and forward to an SVR12 and SVR24!
Love it!
Katie
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Lynn K. Wonderful news! I bet you are incredibly happy and relieved right now! Congrats on your successful battle!
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Congrats Lynn.....
welcome to the club.
Ma
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Great Job Lynn, very happy for you! You too Junkyard
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@ Lynn and all the other folks who have recently gotten great news.....Congratulations to all! I finished 12 weeks of tx with Harvoni yesterday, had 12 week labs done yesterday, & got my results back today............UNDETECTED!!!!! This has been such a roller coaster of emotions because I have been detected < 15 since the beginning of treatment. I just know in my heart that Harvoni was the cure I had been waiting on for so long. I have had Hep C for 30+ years and now have hope that it is finally GONE! I plan to re-test in 4 weeks.
Best wishes to everyone still on treatment....hang in there. BTW, last time I saw my doctor @ UTSW-Dallas, I was told that NONE of his patients had relapsed. I know it's still early and many are just finishing up treatment, but that is SO encouraging to hear. Cheers!! KEEPING THE FAITH!!!
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A big Congratulations to you Karen and Junkyard and anyone else I have missed! It is so wonderful to see the positive results come in and for those who have relapsed, I encourage you to get another blood test as many of those detected at end of treatment and even one at 7 weeks ended up clearing the virus. Please see this thread:
http://forums.hepmag.com/index.php?topic=2383.0
and read these reports for more information:
http://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html
http://www.hivandhepatitis.com/hcv-basic-science/5160-croi-2015-hcv-viral-load-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy
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Just got my 4 week post treatment viral load results
Wow!
Oh happy day Junkyard!
Way to go Lynn. So happy for you. After all your treatment experience, you really deserve this!
All the best,
Bob
Edit: i just realized we aren't supposed to post congrats in this thread, my bad. But after all, we're talking about Lynn here.
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OMG i can't even keep up with all the good news here, @charly8 thank you so much for keeping up with this, it seems to be a lot of work :), @lynn, mel, helen and everyone else that i can't keep up with CONGRATS !!!
I just had my 12 week post done so i should be able to update next week sometime
go us 8)
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Katie invited me over to this thread, love seeing and giving positive news.
I got the 8 week treatment, was given a test at the end, 7.5 weeks and my VL had doubled and my doc said it was a failure, and started trying to get me Viekra Pak.
Here's my info:
1. infected around 2000
2. Treatment Naive
3. VL prior to tx: 500k
4. EOT blood test at 7.5 weeks: Detected: VL Doubled to 1.1 Mill, but my AST and ALT went down to the normal range, AST went from 73 down to normal range: 22 and ALT went from 121 down to normal range: 29
5. 12 week blood test (4 weeks post tx) went to UND !!!
I am really excited to get this news and almost wish my doc would have waited to do blood until 4 weeks post.. I was stressing each test and let it get to me.
My doc told me that I failed the tx when we saw my EOT blood work and I was devastated. I didn't start feeling better until I started forgetting about the test and focused on staying healthy and living.
Hoping for more good news at the 24 week mark!
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1. 4wk - 12 wk EOT VL status - undetected
2. Treatment duration- 12 weeks
3. tx naive or experienced-naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) F1 -1/08
6. Initial VL (date)12/07 400,000. Highest was 1 mil but down to 600,000 when starting Harboni in Dec. 2014
Yay!! My Dr. Said no need to be tested 24 weeks post treatment said I am cured!!
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A big congratulations Ollie! Great news, but if it were me I would want a follow up test. I wouldn't want any surprises down the road.
Enjoy the freedom Harvoni has given you and take good care of yourself!
The best to you,
Katie
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Lynn, Junkyard, Ollie
GREAT NEWS! CONGRATS!!!!!!
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A big congratulations Ollie! Great news, but if it were me I would want a follow up test. I wouldn't want any surprises down the road.
Enjoy the freedom Harvoni has given you and take good care of yourself!
The best to you,
Katie
Ollie...I misunderstood and now see you had a 12 week post test. I looked at it wrong. :)
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Yes. Finished treatment 2/26/15. Tested end of May: Undetected. All enzymes normal. I asked re:a 24 week post treatment test and Dr. said no need. New standard is to test 12 week post treatment and if undetected IM CURED!! I asked about next visit and they said no need unless I had some other GI issues. Yahoo!! I can't believe this ordeal is over!! Good luck to all of you still fighting. I wish you well!!
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Lynn!
Woooooo-hoooooooooooooooo!!!!!!
I can't tell you how happy I am for you! Yes! Yes! Yes~!
And I know I'm not alone. You've been a model of grace under huge pressure and a kind shoulder and resource for all of us when you were having your own anxieties about the uncertainty of all this......Bless you. I'm going to be walking on air today I'm so happy.
Shoutout to all others who posted...I'll get back to you later, "personally." ;-) I needed to express my joy for my girl Lynn!
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Why Thanks Meg aww shucks I am blushing just relieved to be here and hoping it holds.
Congrats to all the SVR folks
Have to climb a hill lift up our kilts and shout freedom!!!!!!
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;-) Lynn. Got my hiking shoes on...;-)
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Okay who is bringing the blue face paint?
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Finished 12wk treatment end of April of Harvoni, Genome 1a, 30 day test afterwards was positive and did another one week later and was positive. Not thrilled.
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Texasone
Sorry that's got to be a bummer for you but I wouldn't loose hope just yet. I would get another lab at 12wk post tx.
At the moment this won't make you feel any better but there's some new drugs coming soon if nessary.
Good luck and again sorry :(
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Sorry to hear texasone,
I know that result can make you feel low. Try not to focus on it and stay positive. I know that's easier said than done.
Was the result in the millions or a low detection? Is this your first try at treatment?
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Yea, Tex, give us more information to help you with.. what were your viral loads on your 4wk and 5wk post treatment tests? Its very important to see what direction your viral loads are going, and how large they are.. If theyre small, look at my signature detail for some encouragement.
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Is it unusual for the AST and ALT to somewhat spike after tx?
I just got all the info on my 4wk EOT labs. My Ast has risen to 46 and ALT to 29. The last labs I did was before EOT about 1 week. My Ast was 38 and ALT was 25.
I hope this is not a precursor to something bad.
My vl was und and everything else seems to be coming back after 12 wks of riba and harvoni.
I plan to ask my dr about this as well. This may be a long 7 weeks to wait
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YAY!!! I got my 12 week SVR-UNDETECTED! My doctor did a 4 week test during treatment (undetected) and one at end of 8 week treatment (also undetected). And the side/after effects have gone and I feel back to normal.
1. 12 wk EOT VL status - Undetected
2. Treatment duration - 8 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (12/14) - F0
6. Initial VL (12/14) 4,700,000
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Pattie
Congrats!
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Thanks Bob!
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Here's your HAPPY DANCE PATTIE! WOOOO HOOOO wAY TO GO GIRL!
Do something nice for yourself and relax and enjoy your healthy life. Great News!
Katie
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Is it unusual for the AST and ALT to somewhat spike after tx?
I just got all the info on my 4wk EOT labs. My Ast has risen to 46 and ALT to 29. The last labs I did was before EOT about 1 week. My Ast was 38 and ALT was 25.
I hope this is not a precursor to something bad.
My vl was und and everything else seems to be coming back after 12 wks of riba and harvoni.
I plan to ask my dr about this as well. This may be a long 7 weeks to wait
The viral load is the biggie and the 12 week post is the important one. May just be something else or just due to the Riba. I am not that informed about that but others here are. Talk to your doctor but don't let your imagination run with this. You are doing good so far! Congratulations on being Undetected. That is huge!
Katie
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Thank you Katie! I am so happy now!
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Opps...sorry I spelled you name wrong Pattie. I'll fix it.
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Thanks Katie
I really do know that, it is just a roller coaster that is sometimes tough. I have sent a message to my doc. I am sure he will say the same thing, it is just always in the back of the mind.
Thanks again
Junkyard
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Is it unusual for the AST and ALT to somewhat spike after tx?
I just got all the info on my 4wk EOT labs. My Ast has risen to 46 and ALT to 29. The last labs I did was before EOT about 1 week. My Ast was 38 and ALT was 25.
I hope this is not a precursor to something bad.
My vl was und and everything else seems to be coming back after 12 wks of riba and harvoni.
I plan to ask my dr about this as well. This may be a long 7 weeks to wait
These liver function values fluctuate.. The difference in the numbers you're quoting is tiny; I'd view it as noise in the system.
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These liver function values fluctuate.. The difference in the numbers you're quoting is tiny; I'd view it as noise in the system.
I have to agree. If the small increase in AST especially was due to liver cells being killed by HCV then the VL would certainly not be UND. Those of us with F4 and a high body mass can expect higher alt and ast during and post treatment. Not that I would do it but if someone had more than a few ounces of booze a day or two before a LP test, the result could very well scare the doctor and the patient. It would not be surprising to see AST up in the 60s or 70s if someone did this.
Normal AST for many is in the 30-40s and a constant reading of over 60 is a key indicator of advancing cirrhosis. I am sure if I lose some pork this summer my AST will come down though because fatty liver disease can be a double curse especially if you have other liver issues to deal with.
But to hell with it for now I am going out to get myself a nice MooseTrax ice cream sundae!
Cheers
Eric
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started Harvoni 12/13/14....4 wk ud 8 wk ud 12 wk ud , 12 eot 3 million vl. Harvoni did not work and being ud on all previous tests. Totally devastated. sorry
John
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John, wow that sucks, sorry :( you need time to process this then start looking into the new drugs coming out...bottom line don't give up.
Again sorry.
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started Harvoni 12/13/14....4 wk ud 8 wk ud 12 wk ud , 12 eot 3 million vl. Harvoni did not work and being ud on all previous tests. Totally devastated. sorry
John
What crippling news. I am so sorry and it just makes no sense. So sorry. I have a test at 16 weeks which is on the 25th. I was detected at EOT and at 8 weeks post undetected, so now I am worried not just for me but for all of us.
Just know they are still coming up with other treatments and it won't be long until they find something that works for everybody. Not much comfort right now but hope is still there so don't give up.
Sending you a big ((((HUG)))) John!
Katie
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Yea; really horrible news. Each time another one of these pops up, it shakes everybody to the core... Its a real gut shot to those of us who think weve reached SVR; creates a deep sense of vulnerability in everyone... And for John, who tested UND while on treatment at 4 wks, 8wks, and EOT, what a cruel turn of events. What a cruel irony of being Undetected throughout treatment only to relapse before SVR12, when there are those of us who report Detected at EOT and even after, who wind up Undetected at that same SVR12 marker.
The one Im really dreading the most is the SVR12 UND result that becomes Detected with viral load at the SVR24 test... Thats going to be a killer, although the odds are minuscule of it ever happening.
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1. 4wk EOT VL status Undetected
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4 fibrosis status unknown, ultrasound only- showed nothing
6. Initial VL -1 mil in mid 2014, likely infected 1972.
This is my first post, but Ive been reading your posts for the past year, since diagnosis. Viral load at 4 and 8 weeks during treatment was detected <12, so results 4 wk after EOT was quite a relief ! Liver enzymes are all normal now, platelets a little low. Feeling more energy than I've had in years! Many many thanks to all of your informative posts, made the journey so much smoother...from insurance coverage, through side effects, interpreting lab results to post EOT.
Will post 12 week EOT when known. Best wishes to all!
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Grateful52
Good luck.
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Dear John,
I am sorry to hear this. I want to say something encouraging, but not empty, when I know that healing from this news is a process that takes time. I've been through it, as have others, and feel free to lean on us.
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Hi John,
I'm sorry to hear this, and, having failed treatment before, I know what a bummer this can be. Please don't be to hard on yourself.
Hang in there. There a lots of new things on the horizon.
Best wishes, Mike
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John,
Let me echo the words of hope others have offered you. I too relapsed, and it was devastating. Unfortunately 90% success rates still means that 10% experience failure. As others have said there are more and more options and improved treatments nearly every year, so chin up and you will beat this awful virus.
Best wishes,
jack
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Hi John
So sorry to see this news
I also failed Sovaldi and Olysio last year and was crushed by the news.
Hang in there new meds are coming that look like even better results.
But for now I am sending a warm hug out to you hang in there
Lynn
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These liver function values fluctuate.. The difference in the numbers you're quoting is tiny; I'd view it as noise in the system.
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Thanks for the words. I have been through the relapse brefore and it really does make you feel very helpless. What we have to go through is bad enough but then to get the bad news is really heart felt.
I got my news last time the night of my granddaughters graduation from high school.
Hoping that day never comes again.
Good luck to all
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I had the same a slight increase at 4 weeks post but I am trying not to be concerned as my ALT/AST are still in normal range and yours look like they are also.
When I relapsed last year it was my ALT that went above normal.
My EOT Sov/Oly last year were ALT 29 AST 25
and my results on relapse 12 weeks later ALT 56 AST 45
Did you have a 4 week viral load test and have those results come in yet?
Good luck
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update for labs, 12 post is back and UND, i will ask my family doc for 24 wk labs just so i can feed my OCD, but for now done, done and done.
1. 12 wk EOT VL status - Undetected
2. Treatment duration - 12 weeds
3. tx naive or experienced - experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status unknown
6. Initial VL unknown from relapse
stay well everyone
kate
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YAY Kate!!!!!!!
I'm getting 24wk labs too, my doc only wanted 24 but I requested 12wk too...I wasn't waiting that long to find out.
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Congrats, Kate!
Mike
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I put on my dancing shoes and here's your HAPPY DANCE KATE! You just made my day. Celebrate your new life and stay in touch!
Katie
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Thanks to everyone for the kind thoughts. It's very difficult to process, almost as if I'm grieving. Will get through this. Just really believed that I was finally cured, only to have the bottom fall out. Need a little time and then I will come up with a new game plan. Everything in my life was finally going good and then blasted with the news I relapsed. Really tough blow. So happy for everyone that made it. Thank you for caring.
John
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John, You are grieving and that's OK. You will move on, you've given your liver a much needed rest, and hope is not gone for a cure in the near future. We are here for you.
{{{HUGS}}}
Katie
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John
Sending good vibes your way.
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Lynn,
4wk vl und. That's the great news
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Kate it is time to attack a chocolate cake. Well at least a small one! I know when my 12 week comes in I will do something special for every single person who has helped me through this nightmare. THIS MAKES ME HAPPY HEARING SOMEONE WHO relapsed with 1a has made the 12 week UND!
Cheers and tears
Eric
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Kate it is time to attack a chocolate cake. Well at least a small one! I know when my 12 week comes in I will do something special for every single person who has helped me through this nightmare. THIS MAKES ME HAPPY HEARING SOMEONE WHO relapsed with 1a has made the 12 week UND!
Cheers and tears
Eric
-----------
Eric
Chocolate cake sounds SO good :)
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thanks guys, it feels so great and a little surreal to finally say it "i HAD hepc". @Eric, if i gain any more weight from this i will need a whole new wardrobe. I am actually hoping that i can see a piece of chocolate and not eat it finally.
stay well everyone, and thanks for holding my hand through this :)
kate
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AWESOME Kate! You made it and I hope I'm right behind you. So happy to hear you got through. Take care of yourself and enjoy the victory and have a long enjoyable life with your family. 12WK SVR test for me next Friday.
John, so sorry to hear your news, hang in there! They are getting the better of HCV with new treatment approaches. You will get there soon, keep plugging away at beating the virus. Best wishes.
AL
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59 yr female genotype 1B
probably contracted blood transfusion in 1980
started Harvoni treatment 01/10/15 and completed the 8 weeks on 03/06/15
My test showed I had 15 out of 2,017,239 after treatment
Recent test: 05/15/15
Component Latest Ref Rng 5/15/2015
ALBUMIN 3.8 - 5.0 g/dL 4.1
AST 10 - 35 U/L 17
ALKALINE PHOSPHATASE 0 - 153 U/L 89
ALT 10 - 35 U/L 14
BILIRUBIN 0.3 - 1.3 mg/dL 0.3
BILIRUBIN, DIRECT 0 - 0.3 mg/dL <0.2
PROTEIN 6.0 - 8.3 g/dL 7.2
HCV RNA HCVXD IU/mL HCV RNA NOT DETECTED
HCV RNA COMMENTS ::::::::::::::::::::::::::::::::::::::::
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DeeDee
Congrats!
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1. 4wk - 12 wk EOT VL status-4 Week-Undetected
2. Treatment duration-24-Weeks 3. tx naive or experienced-Naive
4. Genotype (1a or 1b)-1a
5. F1-F4 fibrosis status (date)-F2-1/1/2014
6. Initial VL (date)-6 Million +
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Hepcbgone
Congrats to you too.
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Congrats Bob V & Hepcbgone :)
I forgot to mention:
My FibroSpect was F0-F1 index 9
Sonogram Impression- Normal liver in size/shape and positioned with no space-occupying lesions or dilatation of the biliary tree.
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Hi Guys
My brother was also on Harvoni, his HepC profile was almost identical to mine EXCEPT he had GT-1B.
He also reached SVR 12, so another successful Harvoni patient.
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Hi all,
I'm just getting the opportunity to check in with everyone---it's been too long....
So wonderful---beyond words actually---to see all of you who are achieving SVR....I'll be testing 12 weeks POST EOT in July.
But for our friends here who have relapsed---I am so sorry. We hurt with you. Huge hugs and know that as hard as this is right now that you will rise again to fight this virus. For now, let yourself feel what you're feeling and come over here any time. There are lots of wonderfully broad shoulders here...Meg.
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1. UD 4wk during treatment. 12wk EOT Relapse VL 100,000
2. 8 weeks
3. tx naive
4. Genotype (1a)
5. F1 01/01/2014
6. Initial VL 100,000 12/1/2013
Trying to decide if I should retreat for 24 weeks or wait for new treatment.
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Mycache...so sorry to hear that. The research has made this great breakthrough and they are constantly improving with new treatments on the horizon. Good luck to you in the future and you will go forward and be cured.
We all ache inside every time someone's treatment fails. You aren't alone.
Katie
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MyCache.... Really sorry about your results.. Like Katie said, it effects us all when this happens. Did you have any on-treatment or post-treatment viral loads drawn other than 4 wks into treatment, and 12 wks post treatment?
I think studies show an 80% svr rate when 8 wk Harvoni treatment failures get retreated with 24 wks of Harvoni. Or, you might wait for the next treatments to come online which will have somewhat better odds.
Keep us apprised.
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Mycache
So sorry to hear this, it really sucks. Like Katie and Paul posted there's some new meds coming. As for retreating with Harvoni if Paul is correct at 80% not sure I would do it.
Best of luck moving forward.
**Just to be clear this lab is 12wks post tx ?
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Yes.. I completed treatment 1/31/2015 and had post treatment labs on 6/5/2015. VL was back to where it was pretreatment along with AST and ALT levels. Thanks for all the kind encouragement..
Linda
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Unfortunately, I know how it feels to have the treatment not work. I was VL 120 two weeks post-treatment. My doctor just said to start coming in every six months to check my liver function, he said that is all, no other way to go. I have no option for longer treatment, I am having other problems that prevent me form working full-time so I get Illinois Medicaid and you only get one chance in a lifetime for treatment. I may have a chance if I am approved for disability and I get Medicare, I don't know. My problem is that I have known for two years now that I have cirrhosis, and I have some problems associated with that. I am going to try and get my doctor to do another RNA test in a few months to make sure, but I don't know if I will be allowed to do that. I think Harvoni should up the treatment to 24 weeks for all people who have cirrhosis, treatment naive or not. I guess we'll see.
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Hi Terry, Please encourage your doctor to check your VL again at 12 weeks post tx. There have been several of us who cleared after being detected at EOT and another who appeared to relapse and cleared. Even if you didn't succeed, at least you'd know for sure.
It is a hard blow to receive that news, and I send you a big {{{HUGS}}}!
Katie
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8 week treatment
naive
post 12 weeks as of 6/11/15
Cured!
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Hope4cure. Super! Happy for you! Enjoy the rest of your life without this dreaded disease...
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Thank you and seeing how I have had it since birth (32 years) it is truly awesome.
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Hope4cure
Like I posted on the other thread congrats!
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The latest data I see is from April 29--is there an update or is this all there is at the moment?
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Thanks for the replies everyone. I know this is for people 12 weeks , but I guess that is not how my doctor is handling this. He gave me a RNA test two weeks post-treatment and I guess that's it. I was UD 4 weeks into treatment and VL 120 two weeks post treatment. I will take the advice given here and push for a test at 12 weeks, hopefully I will be one of the ones who clear. I'll drop in in the future and let everybody know how it went. Thanks.
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Best of luck Terry, push hard for the follow-up test and hang in there.
I just got notified by my PCP, 12 week SVR results are UNDETECTED. The DRAGON is dead, the DRAGON is DEAD........... I know 24 week SVR is the real clincher, but I will take this as it is. I brought my gun to this knife fight and won! Thanks for all of the encouragement and advice along the way. I hope all those that are waiting get this wonderful news and those still treating, hang in there, you will make it.
Best wishes,
AL
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Al
Wonderful news, congrats!
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Al, What WONDERFUL NEWS !!! You definitely get a High Steppin Happy Dance!
Have a wonderful life!
Katie
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agh @Al, I have been waiting for this post :-* :-* :-* :-*
I hope its sunny there today for you
kate
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Just received results ;D
1 12 week EOT status - undetectable
2. Treatment duration - 12 weeks Harvoni + Ribavirin
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - Nov 2014 - 1.8 million
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Barbs
Congrats!
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Harvoni for 8 wks just had my results for 3 month eot undetected will have one more test at the 6 month mark
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Annie
I was hoping you'd post. Wonderful news, congrats!!!!
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Congratulations to Annie and Barb. Thanks to Bob V, Katie, and Kate. I am already feeling a ton lighter. I'm not sure if it has really sunk in yet. Getting stronger every day and the respiratory depression is getting a bit better. I can now ride the bicycle without getting too winded. tinnitus is less, so I guess I am on the mend.
To everyone that has given me advice and support through treatment thank you so muck. The support on here is like no other. Those of you in treatment hang in there, there is hope and light at the end of the tunnel. I waited 40+ years to defeat the Dragon. It can and will be done!
Best wishes,
Al
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Hello Everyone, I posted this in another forum and am reposting here, I just want to let everyone know I went to Doctors today to go over my post treatment blood work. I am genotype 1a. Stage one to stage two liver damage. I started Harvoni in December and was prescribed twelve weeks worth of the medication. My experience with Harvoni was not bad at all. I finished my last pill Febuary 22nd and had blood drawn June 9th. I was told by my doctor today that I am undetected and cured. My doctor told me that I know longer have the virus in my blood. He said I will always test positive because of the antibodies but I no longer have the virus. Whooohooo so happy. This was my second try at treatment the first was back in 2002 interferon and ribavirin for one year. I relapsed and decided to wait for something better. I believe I have been infected for over twenty years. I am glad to be done with this and can now move on with my life. My doctor told me the damage that was done to my liver is reversable and I should go back to stage zero over time. He wants to see me back in one year to see how my liver has healed now that I am cured. I want to wish everyone luck and hope all are cured from this terrible disease. Harvoni has gave me a new lease on life I know longer feel drained with brain fog. I can truly feel the difference between the old me and new. Have more energy. Thank you everyone, I hope my post gives others hope, there is a light at the end of the tunnel. :)
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Yay Amy, congrats!
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Congrats, Amy!
Time to celebrate your new life!
Best, best wishes, Mike
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Thank you everyone, I am grateful for this forum and all its support. Going to give back and help others. :)
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One more for the tally - UND 4weeks POT after 8 week Harvoni!
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Eleanor
Congrats! Are you doing 12wk post labs too?
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I just got my recent results and I am Hep C FREE! Totally delighted to no longer be a bio-hazard, and was one of the few who cleared AFTER being detected at EOT. I am still not feeling well and would love to have my Harvoni energy back but I am sure I will improve with time. I actually feel worse in some ways than I did prior to treatment, only very different, and many things I had for over a decade are totally gone. Good luck to all on this journey and keep the faith!
1. 16 week Post EOT UNDETECTED
2. 8 wk Post EOT VL status - Undetected
3. Treatment duration - 12 wks
4. tx naive or experienced - tx naive
5. Genotype (1a or 1b) - 1a
6. F1-F4 fibrosis status (date) - no cirrhosis
7. Initial VL (date) - 2.6 mil
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Katie
Wonderful news, congrats! :)
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Thanks Bob. You are always so supportive. Best of luck to you and everyone on this forum. We are the fortunate ones and we will be here for those still fighting the battle! Onward Warriors!
Katie
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WOOOOHHHHHOOOOOOOO!, Awesome news Katie, you rock! Now you can move on from this and start getting a lot more energy.
Best wishes, :) :) :)
AL
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KATIE!!!!!!! CONGRATS sister!!!!!!!!! So happy for you, that news made my day xo
nicole
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Katie, I knew you would do it! You must be elated. I saw your announcement in another thread and commented there, but wanted to make sure youd see it! CONTRATULATIONS!!!!!!!!!!!!!!!!
I go for my 24 wk test in a couple of weeks. Hope its just a formality!!
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You guys are all so great. Thank you for all of your support these past 6 months. You all made my journey so much easier and I'll stay on this forum for awhile as I am addicted to it :D and need to follow all of my friends and how their journey is going!
Have a fabulous weekend and enjoy each and every day!
Katie
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hey katie, i am just seeing this, such a great day ;D ;D I hope this finds you well, i am moving forward and starting to feel like I'm getting a handle on felling really well lol.
its so cool to see everyone getting to the finish line :-* :-* :-*
kate
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Just got Helen's 8 week post viral load, UNDETECTED!!!!!!!!!!
will be back with 12 weeks post results very soon and feeling very confident that she will now be cured...
Thanks to all here.
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ma snart
Great news!
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Is it unusual for the AST and ALT to somewhat spike after tx?
I just got all the info on my 4wk EOT labs. My Ast has risen to 46 and ALT to 29. The last labs I did was before EOT about 1 week. My Ast was 38 and ALT was 25.
I hope this is not a precursor to something bad.
My vl was und and everything else seems to be coming back after 12 wks of riba and harvoni.
I plan to ask my dr about this as well. This may be a long 7 weeks to wait
I'm glad you asked this question. I had some concerns after my 4 week post EOT came back with an elevated AST of 35 up from 19 4 weeks ago. After reading some of the resonses and searching online, I feel better. My ALT only went up to 23 from 21 so that's good. When the main test comes in, i'll come back and post the results to add to Charly8's stats.
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Congrats to all of you out there who are Hep C Free now!!! I just got my 4 week EOT results back.....UNDETECTED!!! This feels so amazing. I know I still have one more hurdle at 12 weeks, so I am cautiously optimistic. I haven't been this happy about anything in years. Talk about cause for celebration on this wonderful July 4th. Happy holiday to all of you!
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Karen2717 and GLCII
Great News! Enjoy the 4th.
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Hello Everyone
12 week check in - UNDETECTED
ALBUMIN 3.8 - 5.0 g/dL 4.2
AST 10 - 35 U/L 23
ALKALINE PHOSPHATASE 0 - 153 U/L 90
ALT 10 - 35 U/L 14
BILIRUBIN 0.3 - 1.3 mg/dL 0.6
BILIRUBIN, DIRECT 0 - 0.3 mg/dL <0.2
PROTEIN 6.0 - 8.3 g/dL 7.2
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DeeDee
CONGRATS!
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Thanks Bob V
Doctor said 3 months if undetected he will consider it "Cured"
I am very happy at seeing others good reports
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I was skeptical about my status, and cryed a lot after the last pill and the half-life of the drug wore off at about 72 hours after last dose. I woke up with those old familiar night sweats! I thought for sure the beast had returned, like it did the last time I came off treatment. Well, just pinch me ! My test 4 weeks post treatment are Undetected! And the swollen feeling in my abs are gone and now I am sleeping through the last 3 days in a row. I'm so happy I was wrong about those night sweats. Amen!
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Congrats Coloradogirl! Way to go! :)
kim
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All this good news is a way to celebrate our Independence from Hep C; the alien parasitic virus. Congratulations to all undetected warriors, and for those who didn't make the grade this time around, we are all here for you! There is something just around the corner and you too will be free!
So happy for you DeeDee and Colorado Girl!
The fireworks has new meaning for many of us tonight!
Katie
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Thanks Bob V
But no congrats yet. I have all the tests back except the main test. I'll know that one monday. But after looking at my other labs, it's looking pretty good. :)
And Congratulations to DeeDee, Karen3717 & Coloradogir!!! :) It has to be a Great feeling knowing that after 4 weeks the virus is still gone. DeeDee It has to be an Amazing feeling after 12 weeks and being Undetected. ;D
I never put much thought in to these EOT tests while treating but waiting for these EOT tests to come to back sure does come with a certain amount of anxiousness. Time is just dragging.
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Congrats Coloradogirl!
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Finally undetected for more then 2 weeks after 3 previously failed treatments which included 3 liver biopsies, 4 ultrasounds, God only knows how many blood draws, 7530 Riba pills, 492 shots of interferon & 14 Procrit injections.
After all that, it was 84 pills that has had the most success so far.
1. 4wk - 12 wk EOT VL status / 4 Week Post EOT (Undetected)
2. Treatment duration / 12 Week
3. tx naive or experienced / 3x Experienced
4. Genotype (1a or 1b) / 1a
5. F1-F4 fibrosis status (date)/ F2-F3
6. Initial VL / 2/17/14 VL 12043488
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12 week post treatment Relapse! VL 424,000
8 wks Harvoni
Moderate fibrosis
Geno 1a
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Karen1124
So sorry to hear this :( I know nothing we can say at this point will make the disappointment less, hugs.
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GLCII
Congrats!
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GLCII
Congrats!
Thank You Bob V ;)
I was pretty excited till I read karen1124's post. :o
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Failed 12 weeks Harvoni Treatment
Post 4 weeks lab results 06/29/2015 - HCV RNA Quantitative (PCR) 3,661 IU/mL
I recall reading of patients who tested positive at 4 weeks, but end then ended up clearing the virus. but this is not even close by the looks of my recent VL, so I've no expectation that will happen here.
Thought I was in after testing undetected at 8 and 12 weeks. Kinda sucks when you can't make the cut at a 97% cure rate...
Not certain of next steps at this time.
Regards,
Pete
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I was pretty excited till I read karen1124's post.
--------
I agree, this thread has lots of up's and down's.
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Pete
Sorry but I would wait until the 12wk post lab before losing hope.
Sending good vibes, Bob
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Failed 12 weeks Harvoni Treatment
Post 4 weeks lab results 06/29/2015 - HCV RNA Quantitative (PCR) 3,661 IU/mL
I recall reading of patients who tested positive at 4 weeks, but end then ended up clearing the virus. but this is not even close by the looks of my recent VL, so I've no expectation that will happen here.
Thought I was in after testing undetected at 8 and 12 weeks. Kinda sucks when you can't make the cut at a 97% cure rate...
Not certain of next steps at this time.
Regards,
Pete
God Damn, I hate seeing these positive results. I had a hard time cracking my RNA results open this morning. My heart races everytime for some weird reason. Believe me when I say it's hard to enjoy and negative when people are showing a positive. This is twice since 8:30 this morning I've read bad news.
Pete
That's still a pretty low number considering that some of the positive results after weeks 4, 8 & 12 are coming back in the 6 & 7 figure range and your's is just in the 4 area. I know there's nothing anyone can say to make you feel better and I know how shitty I would feel if I saw that myself but there's still might be hope. I hope! You should still do an 8 week test. 6 week if you can talk your doc in to it. What are your other labs saying? How's your ALT & AST looking?
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I really appreciate the replies.. it does help.
I'm not sure why, but LFT's were not performed on this 4 week post tx lab test, only V/L. I'm still scheduled for more lab tests in 8 weeks according to my nurse, along with another MRI to monitor a liver cyst.
I too started feeling crumby at some point post tx. Moody, bitchy, intolerant ... seemed to have lost my appetite as well. Now that I know why, I need to chill it and be more sensitive to those around me.
Best,
pete
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I am really sorry to here that for both of you, Karen and Pete. It is so strange how the cards fall, but know we are all here to support you and you will be successful as they are moving forward with understanding and continuous research. There are still variables out there that need to be dealt with for 100% cure!
Sending you guys big {{{{HUGS}}}}
Katie
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Karen and Pete,
My heart goes out to you. I hope that an absolute cure will come about. They are getting really close. I think Giliad knows this, and that's why they are advertising their product like crazy. You just hang in there a little bit longer.
Hugs and prayers!
Colorado Girl
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12 weeks Post Harvoni, I have achieved SVR and continued to maintain it. I an hopeful that undetected remains UND in to the future
Detected in 1990
Treated with Interferon, got sick from tx and not at all better.
Began Harvoni Jan1,2015
UND after month 1 and continued UND for the full 12 weeks.
All blood tests in normal range
Began with viral load of 5.9 million
Fibrosis score 2/3
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Mm
Congrats!
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Yes! Congratulations Mm :D
Anyone have any idea when the next set of stats is coming out? Charly8?!
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I noticed a few people had questions about spikes in their ALT & AST levels on here. Since ALT & AST are possible indicators of a problem and since these tests usually come back before the Quantative test, can we start adding our ALT & AST levels in to the stats?
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I dont think Charly8 has posted in over a month.. Hope everything is ok!
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Saw this on the Harvoni web site
Seems they want to start "The HARVONI Wall"
http://www.harvoni.com/taking-harvoni/harvoni-wall
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I checked it out and find it strange they don't want information on those who failed. Also it would be beneficial if they'd list other side effects since so many had additional problems not listed. Seems it is just a "Wall" to help sell their product without giving all the information. I'll check on it again after it has been up for awhile but will pass on signing up now.
Thanks for posting it Lynn. I always appreciate your information.
Katie
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Katie, I'm with you on the wondering! It does sort of run true to form from my experience of calling Gilead after my relapse, "Oh sorry bout that." I asked if there was anything they could do for me, nope sorry, bye! I don't mean to sound bitter, but it was a stark contrast to all of the hand holding they provided during treatment! I was truly shocked!
I mean at least let me sign in invisible ink! ;)
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Hi all,
I've missed you. I've been on vacation for a few weeks along with vacationing from the internet ;-)
It's so heartening to hear about so many reaching SVR and painful to hear of others of us who have relapsed....."Hang in there" seem like cold comfort for people like Karen, Pete, terih---but i have no other words. Stay here and get the support and information that this wonderful site provides...hugs.
I was undetectable at 8 weeks post. and will be getting my 12 EOT next week.
We managed to somehow create lives despite HCV, created moments that make life worth living, and so no matter what results show let's not let this hcv parasite take them and future ones from us....Many hugs
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Hi all,
I've missed you. I've been on vacation for a few weeks along with vacationing from the internet ;-)
It's so heartening to hear about so many reaching SVR and painful to hear of others of us who have relapsed....."Hang in there" seem like cold comfort for people like Karen, Pete, terih---but i have no other words. Stay here and get the support and information that this wonderful site provides...hugs.
I was undetectable at 8 weeks post. and will be getting my 12 EOT next week.
We managed to somehow create lives despite HCV, created moments that make life worth living, and so no matter what results show let's not let this hcv parasite take them and future ones from us....Many hugs
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I dont think Charly8 has posted in over a month.. Hope everything is ok!
On May 29th he posted his 4 week EOT results. His last post was on June 5th. He seemed to be pretty in to doing the stats. I'm hoping nothing has changed since his last test. Has anyone heard from him?
Finally got my 4 week SVR results!
Charly8
1. 4 wk post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx Experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Fibrosure- F3 (Dec 2014), Fibroscan F0-F1 (Mar 2015)
6. Initial VL (date) - 1.05 Mil (Dec 2014)
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I don't know if I'm the only one who was cautiously optimistic about my 12 wk SVR status. I guess because my doctor is still testing me every 6 weeks. I'll be happy when its over. Just did my 18 week test and still UND. Just wanted to post that in case any other 12 weekers are also worried that their "cure" status is premature. l will post again for my 24.
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post 4 RNA "Negative" not detected!!! post 12 RNA "Negative" not detected!!! SVR ;D
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12 weeks post harvoni... UNDETECTED
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More GREAT news from 007 and Momo!
YAY! Way to GO!!!
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'What a long strange trip its been'.. .Indeed. Recap of vl test progression:
End of 8 wk treatment: Detected 29
7.5 wks post treatment: Detected < 12(LLOQ)
11 wks post treatment: Undetected
wait for it
wait for it
.
.
.
This just in:
.
24 wks post treatment: UNDETECTED! :)
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Congrats dragonslayer!!! You are free! Through all the ups and downs, you are cured!
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'What a long strange trip its been'.. .Indeed. Recap of vl test progression:
This just in:
24 wks post treatment: UNDETECTED! :)
You got that right buddy!
{{{{{HUGS TO YOU}}}} & CONGRATULATIONS!
ENJOY!
Katie
PS I'm going to miss you. You helped me through my journey SO much. Thank you!
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Thank you guys... But Im not going anywhere! Ill still be around, correcting the myths and imparting my own brand of scientific reasoning backed up by data. Im so glad my case has given confidence to others who wound up detected at EOT... Its the post treatment progression which seems to be more important than an UND at EOT. So long as the next few tests show a diminishing viral load, then this is inconsistent with a replicating and vital virus.. So long as that load decreases, even if detectable after treatment, odds seem to strongly favor eventual SVR by 12 wks post. If nothing else, this was a game changer for a lot of us. Thanks to all for their invaluable support. But this isnt goodbye.. Believe me, Ive gotten too used to things around here to just up and walk away :) Good luck to those on treatment and those awaiting post treatment results. All I can say is Harvoni, I bow down to you!!!!!
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'
wait for it
wait for it
.
.
.
This just in:
.
24 wks post treatment: UNDETECTED! :)
FANTASTIC NEWS PAUL!!!! CONGRATS! Congrats to our other recent dragon slayers 007 and Mom!
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24 weeks post treatment test results back last week.
UNDETECTED
ALT/AST 24/24
It worked!!!!! I feel great. It took about 5 months after EOT on Harvoni before
side affects wore off. (dizziness mainly).
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Hey Joe!! CONGRATS to YOU!!! Life is good!! Karen
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Thanks Karen. I am sure you will beat it out soon.
If they gave you the 12 week program instead of the 8 week it probably would have done it. It's a battle in itself just fighting with the doctors and insurance companies.
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Thanks Karen. I am sure you will beat it out soon.
If they gave you the 12 week program instead of the 8 week it probably would have done it. It's a battle in itself just fighting with the doctors and insurance companies.
Great news Joe! Congratulations! Wooo Hooo!!!
Thanks for adding the 5 month wait to feel good. I am 4 months out and still have incredible weakness. All blood work is perfect so how can I be so healthy and feel like crap? Glad to hear there's a chance to get me back to normal! Thanks!
Enjoy your Hep Free Life, Joe!
Katie
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I received my 4wk post tx labs today "undetected". Was geno type 1b, 12 wk tx. First post, although I have been reading for sometime. I was able to get treatment, get the coupon for Harvoni, and only pay $5 total because of all the info on this forum. Thank you. I hope we all get cured!
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Katie,
Sorry you are still feeling bad. Before I started feeling better I went to my Internist
and had the full load of blood tests run including Vitamin B12 and Vitamin D levels
and all was fine too. If you haven't check yet, see if you have low B12 or are anemic.
That could be causing the loss of energy. Just a thought.
I was tired a lot and had the weird dizzy feeling worse when I lied down flat.
Actually it took about 5 1/2 months before it all subsided. All I can think is it was my body taking it's time to heal up after years of hepc.
Good luck with it and hopefully you will be ready to climb a mountain in a few months.
Joe
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I finished a 24 weeks treatment on April 28. Just got my results for my 4 weeks EOT (done on May 25th......). I'm UND!!!
Now that I am closing in on the 12 weeks post, the 4 weeks looks kind of precocious! Anyone who was UND after 4 weeks and then relapsed afterwards? I'm only referring to Harvoni here. Just curious!
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Mario, its very rare. As you will see here, SVR4 is 98.5% predictive of SVR12:
http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf
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007, Momo, Tm, JoeK9999
Great news, congrats!
Paul
You've been through more then most with the Harvoni tx. CONGRATS!
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Now that a lot of people are coming off treatment, we need a tally of peoples status.
NOTE: Please post only if you have results from post EOT tests SVR 4wk thru SVR 12wk after EOT.
Please list only SVR4 or SVR 12 status. No results on tx or at EOT because most are undetected then anyways.
Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk EOT VL status
2. Treatment duration
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
Current Status
So far we have 15 people that hit at least the SVR4 mark. 3 of 15 have relapsed. (20%)
Breakdown by treatments
8 weeks of tx - 2 of 3 have relapsed
12 weeks of tx- 1 of 12 have relapsed
Note: We currently have a 20% relapse rate. This is with very limited data and certainly not scientific. Even still this does not seem to correspond to the 95% SVR rate that Gilead has boasted in their studies. Lets hope we get some more SVR'S
i tested neg 1 month after treatment been off harvoni for 6 weeks . lung problems now . any advice
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I've been off treatment for about 6 weeks myself, since June 3rd but haven't noticed any problems. I actually feel better than I have in years.
What kind of lung problems are you having?
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i tested neg 1 month after treatment been off harvoni for 6 weeks . lung problems now . any advice
Hi Scott, I have been off treatment since end of February and have fatigue and weakness (similar like a serious flu) and shortness of breath. Any minor exertion just puts me down. I have never experienced anything like this. I had fatigue prior to treatment but this is totally different. I could still function back then.
I am grateful for the treatment and delighted not to be a bio-hazard with all of my blood work perfect and figure this too shall pass. Just trying to be patient and not get stressed at my undone summer projects.
I do have many Hep C symptoms gone and benefited greatly so am not complaining, just stating facts.
Katie
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Katie, have you had your blood drawn during this malaise and seen a doctor? Perhaps there's something else going on not related to treatment?
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Katie, have you had your blood drawn during this malaise and seen a doctor? Perhaps there's something else going on not related to treatment?
I've had complete blood work done with both viral loads checks and everything is perfect. I was thinking thyroid but that is fine too. Just can't figure out how I can be so healthy and feel like crap. I have been pushing myself to get out daily and weed or prune for an hour or so to get some exercise and berry picking will start soon. It about kills me, but I am a firm believer in moving and the more you do, the more you can do. I'll make it and it will get better. Thanks Paul!
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1. 12 weeks eot undetected
2. Tx 8 weeks
3. Tx naive
4. Geno 1a
5. F1 Jan 2015
6. 500,000 Jan 2015
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1. 12 wk EOT VL status Undetected!!!
2. Treatment duration 16 weeks
3. tx naive
4. GT 1b
5. F4 fibrosis status 12-15-14 Fibrosure
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Congratulations Grodeestok and Sam! It is so great seeing these numbers of victory over Hep C continue to come in!
Do something special for yourself and enjoy your life!
Katie
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Hi All,
7 wks post treatment UNDETECTED!!!
12 wks. Treatment naive 64yrs. old.
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Good Job! Mike2
5 more weeks and you'll be good as gold. ;)
Congratulations Grodeestok and Sam as well.
3 Undetected in as many days is nice to see..
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Thanks everyone. Still can't believe it's real. Just seems too good to be true but I'll take it! Congratulations to all!
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Thanks guys. Been a long time coming. I know that those who relapsed will get cured. I just hope it happens quickly. This forum will remain on my favorites list. I'll be checking in now and then. Thanks again.
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I have been following this thread for a long time now and finally it's my turn to check in with my first post tx results.
1. 6 w post EOT: Undetected!
2. Harvoni 12 weeks
3. Tx experienced
4. 1a
5. F3
6. 1.8 M
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Congratulations Bixter ;)
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1. 4wk EOT VL:undetectected
2. Treatment duration-12 weeks
3. tx naive
4. Genotype 1a
5. fibrosis status--F3-F4 (Mar 2015)
6. Initial VL (2.1million/Oct 2014; retest 700,000/March 2015)
Will provide 8 wk and 12 wk stats as they come in.
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Congratulations mdj
That's good news. I hope we keep seeing more Undetected posts coming in.
As near as I can tell, there are 52 people who reported in on their post 4 & 12 week EOT results. Out of the 52 who reported their results, 40 are Undetected and unfortunately 13 have relapsed.
It would be nice if some of the 50 plus guests, that are lurking and possibly on treatment, would post their results as well.
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As near as I can tell, there are 52 people who reported in on their post 4 & 12 week EOT results
Here's the 53rd data point:
1. 4wk EOT VL: undetected
2. Treatment duration: 12 weeks
3. tx naive
4. Genotype 1a
5. fibrosis status: F0-1
6. Initial VL: 2.94 million
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I will be reporting in end of next week 12 week post tx test next Monday
Hoping I am on the good side of the stats
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It worked for me!
1. 12wk EOT VL: undetected
2. Treatment duration: 12 weeks
3. tx experienced
4. Genotype 1a
5. fibrosis status: F3 (Jan2015)
6. Initial VL: 13 million (Jan 2015)
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Congratulations apache & xkilo ;)
xkilo is that the test you took at the end of your treatment or 12 weeks after your treatment ended?
Lynn K
Good Luck on that 12 week post treatment. I think you'll make it!!!
I would like to see nothing but Undetecteds coming back from now on. As of now it's a 24% failure rate among the people posting on this board. That doesn't jive up with Gileads results. Hence we need more people posting their results. I figure the 47 guests, that aren't spider bots crawling around the site, are here for a reason. If we can get them to post results, we might get closer to Gileads stats.
I do my 8 week post Tx next wednesday. It's not the 12 week post EOt but it's the start of the end.
54 Results Posted
42 Undetected
13 Relapses :( These are not the results I was expecting.
Anyone hear from Charly8?
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It was the 12 week post EOT.
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Went for my 12-week post treatment lab work this morning. Just checked the patient portal and there it was, "HCV RNA Undetected." I suppose this means I have achieved SVR12. At this point I'm not sure whether to declare victory. I think I'll wait until after I talk with the PA on Monday since they usually call me to verify results. In the meantime, YIPEEEEEEEEE!
FWIW I feel great, I had no side effects while on Harvoni and nothing now. I've been busy putting in some miles on my bike getting ready for the fall racing season after it cools down here in Arizona. Still need a few weeks of hill work (ugh). Work remains a bit stressful but better tolerated without all those nasty little viruses messing with my liver.
Continuing healing vibes to all.
Bob
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CONGRATULATIONS TO ALL OF THE NEW UNDETECTORS! yay!
It is wonderful to see all of these great results coming in and this forum is such a blessing in so many ways.
Be happy, enjoy the rest of your healthy lives, and take good care of yourselves!
Katie
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@GLCII
I've been keeping track of the results in this thread but I have also added other Harvoni results I found in other threads in this forum. I have only added results where I could find at least information about treatment duration and when the post results were taken. This is what I have so far:
8 weeks treatment:
21 results with 15 reports of at least SVR4.
SVR rate: 71,5%
This is far from the results in studies which stated an SVR rate comparable to the 12 week treatments.
12 weeks treatment:
57 results with 49 reports of at least SVR4
SVR rate: 86%
This could be a rather realistic real life SVR rate compared to study results of around 95%
I hope everybody continues to contribute with their results. It's also important to follow up from for example 4 w results to a confirmed SVR12. Most of all, I hope that people detected with a low VL
come back and let us know whether they made it to SVR or not.
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1. 12 wk post EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-
6. Initial VL (date) - 3 mil
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Congratulations to all UNdetecteds!!
I'll add my name to the list!
12 post EOT----Undetected. I'm slowly getting back my stamina---many of you know that my case was complicated by colds/sinusitus that preceded and continued during Harvoni(Jan-April)..
But, I've been able to ride my bike, Bob(Bitumen)! and last w/e I felt like I could ride for miles, I felt so good. I sort of crashed this week but it was well worth it. Gliding on the trail, smiling ear-to-ear to strangers who had no idea of the significance of this woman's joy!
All the best everyone. Your being here has been invaluable and integral to my treatment..........Meg
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MEG! HERE IS ONE JOYFUL HAPPY DANCE FOR YOU! I'M KICKING MY HEELS UP!!!
Enjoy your bike rides but for heaven's sake be careful. You don't want to ruin the freedom with a broken leg!
Enjoy, be good to yourself and live life to it's fullest!
Katie
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Katie....you are such a love!!!!!
Thank you and I hope you too get your contagious energy back...look out world!!
Love you, huge hugs!
Meg.
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But, I've been able to ride my bike, Bob(Bitumen)! and last w/e I felt like I could ride for miles, I felt so good. I sort of crashed this week but it was well worth it. Gliding on the trail, smiling ear-to-ear to strangers who had no idea of the significance of this woman's joy!
All the best everyone. Your being here has been invaluable and integral to my treatment..........Meg
Congrats Meg! I knew it was only a matter of time until you got your knees in the breeze. What is "sort of crashed?" Hope not too bad. So happy that your stamina is coming back. Do you have a bike fitness goal? Maybe a grand Fondo?
All the best!
Bob
PS-Chris Froome just won his second Tour de France. Beat my fav Nairo Quintana by 1:12. One more day in the mountains and it might have been different. Was glad Nibali was off the podium after the stunt he pulled on stage 19.
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4 wk EOT.......UNDETECTED :) I've been waiting patiently to add my two cents to this thread. I've been undetected since three weeks into treatment. Pretty happy right now. It think my odds for a 12 and 24 SVR are pretty good right now.
12 wk Harvoni
1a with unknown VL (at one time it was a few million)
Mild Fibrosis
Failed Riba/Interf and failed Riba/Interf/Incivek
Late 90's infection
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Hi everyone.
Best wishes on your recoveries! Katie! I hope you start feeling better right away. comgrads on U$ status. ?I know I am a relic on here belong I took S/O for 12 weeks, I am officially cured at 24week post tx UD!Yeah! Still working on lingering side effects. Taking the holistic path now, no pharmaceuticals as of now another Yeah! So great to hear all the UDs! Much love Sunrise
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Guess I'll have to continue the waiting game. Talked to the PA today. She said that although some consider a SVR at 12 weeks to be cured, their team is more conservative and wait for a SVR at 24 weeks post treatment to declare victory. But she also said those of us remaining clear at 12 weeks still have every reason to be encouraged. Already set up the next lab appt for Oct 19, 6:30 AM, Arizona time. I'll delay any celebrations until then.
Still sending healing vibes...
Bob
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Not to worry, Bob... The predictive value of SVR12 to SVR24 is 99.8% positive.. At this point, its a mere formality! Congratulations!!!
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Not to worry, Bob... The predictive value of SVR12 to SVR24 is 99.8% positive.. At this point, its a mere formality! Congratulations!!!
Thanks for the encouraging words Paul. I know the statistics are heavily weighted in my favor. I suppose I have the psychological need to hear a highly trained health care professional say "you're cured." That's my end game, or as some would say, closure. I have one of those Road Id bracelets that says Hep C. I want to get a new one. I can wait until October.
Oh yeah, congrats to you too! Been a long and sometimes scary road. So happy you beat that bug into submission.
Bob
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CURED!!! -thank you God and modern medicine and BCBS/my employer. I am so grateful. I have been waiting for this for 26 years. Harvoni was tolerable (not perfect) and I worked the whole time. I wish all of you the very best and this disease which has lurked in the back of my mind and body all these years is soon to be a thing of the past. Blessings to all reading these words.
12 weeks post Tx- cured
3 months of meds
naïve
genotype 1
F1
initial v.load - 4 or 6 million (cannot recall which, so call it 5)
-
Please list only SVR4 or SVR 12 status. No results on tx or at EOT because most are undetected then anyways.
Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk EOT VL status
12 EOT VL status NOT DETECTED
2. Treatment duration
24 weeks Harvoni 15 weeks Ribavirin
3. tx naive or experienced
Three time null responder interferon based tx relapsed after 12 weeks Sovaldi/Olysio
4. Genotype (1a or 1b)
1a
5. F1-F4 fibrosis status (date)
F4 in biopsy 01/2008
6. Initial VL (date)
HCV RNA RT-PCR, QT 2422260
HCV LOG 10 6.384 September 5, 2014
current status
cured
-
Lynn,
HOT DAMN!!!!! WOOT WOOT.... FINALLY
I knew youd do it.... Finally, you join the rest of us. So happy for you......
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Lynn that is the best news I have heard in a long while! You have been through the wringer and make my 24 week excursion seem like a walk in the park. My liver enzymes are not good (mid 50 alt) so either I am free of the virus and have fatty liver problems or the little bastards have come back. My tests at week 4 had my liver enzymes way down in the 20s so I am a little scared that I am in the unlucky category again.
I won't know for sure for a few more weeks as they really skimp on testing here in Canada because there are so few labs. All the HCV testing is still hooked into disease control and only one slow understaffed government lab here in BC is allowed to do all the infectious hcv rna pcr.
All the best to everyone who clears, I suspect that I did not. But I am still very thankful that I had the chance and our extended Blue Cross health insurance did not try to skimp me down to a 12 week treatment the way they do elsewhere. If I do require a 12 week retreat with riba I do not know how they will react though so I will cross that bridge if I come to it.
However things go for me I will keep in touch.
Eric
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Lynn K. SUPER! SUPER! SUPER NEWS! I am so happy for you! I feel you did deserve this wonderful break. Enjoy your new lease on life!
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YAY LYNN! I'm Putting my best shoes on to do a HAPPY DANCE for YOU!
You are a true inspiration and thanks for all of your information and support! You now can recover and heal and Love your life!
{{{{{BIG HUGS}}}}
Katie
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8wks post treatment undetected. 1b f0-f1 2x's prior treatment in 1997 and 2000
12 wks. Infected in the 70's. I consider myself cured, and so does my Dr. I will still do the 12 wk test tho. I have been lurking here for awhile. I am so glad you cleared Lynn congratulations. I am happy for all of us!!!!!! Here's hoping we all get cured.
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thanks all and thanks tm and ditto
-
Lynn K. How's your ALT and AST at week 12?
-
No idea this was all verbal haven't seen the results yet on My Chart
Was told they are in normal range tho
The only out on normal continues to be platelets due to portal hypertension and enlarged spleen but again no numbers
Will let you know when they show up
Good luck to you :-)
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Another for the 12 week post UNDETECTED!
Undetected 12 week post EOT
Tx experienced
1b
F1
Initial VL 4.8
Congrats to Lynn and all. I had no idea how much the brain fog was impacting my life until I eradicated this virus. I feel like I have a new lease on life and it feels pretty good!
Thanks to all who posted. I didn't feel so alone among others who were also living with everything that comes with the HCV.
Really hoping many others have the chance to be free of this.
Blue
-
8 wks post tx , undetected after 8 wk tx
Genotype 1b
Tx experienced
Initial VL 4.7m
F0
Will also do 12 week check. B/p and anxiety was too much to handle. Doc was unhappy I stopped but, Thank God, undetected 8 wks post treatment.
Was so good to have this site while treating. I too didn't feel so alone. B/ p. is good now, anxiety less, Joint pain much less.
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Lynn K. How's your ALT and AST at week 12?
Got the week 12 liver function back
PROTEIN, TOTAL
7.1
Normal 6.0-8.5 g/dL
ALBUMIN, S
4.7
Normal 3.5-5.5 g/dL
BILIRUBIN, TOTAL
0.5
Normal 0.1-1.2 mg/dL
BILIRUBIN, DIRECT
<0.2
Normal 0-0.4 mg/dL
ALT (GPT)
29
Normal <33 U/L
AST(GOT)
27
Normal 0-40 U/L
ALK PTASE
71
Normal 39-117 U/L
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Lynn K. Wow! Your results couldn't be any more "normal" than what they are! You are right in the middle of everything! I am really happy for you and your body should start to slowly heal itself. Now you can hope to get a reduction to F3? You have my very best wishes!
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Congratulations Lynne. Wonderful news.
-
Got the week 12 liver function back
PROTEIN, TOTAL
7.1
Normal 6.0-8.5 g/dL
ALBUMIN, S
4.7
Normal 3.5-5.5 g/dL
BILIRUBIN, TOTAL
0.5
Normal 0.1-1.2 mg/dL
BILIRUBIN, DIRECT
<0.2
Normal 0-0.4 mg/dL
ALT (GPT)
29
Normal <33 U/L
AST(GOT)
27
Normal 0-40 U/L
ALK PTASE
71
Normal 39-117 U/L
Lynn, great numbers! So, then, is this a 'normal' situation for those with cirrhosis? With numbers like this, other than symptoms which may or may not be present, who'd ever think they had cirrhosis?
-
Yes I have cirrhosis but live enzymes show injury that is occurring only not the extent of damage that has happened already. For me my liver is no longer under a constant attack but the damage has been done.
I haven't seen my platelet count yet but that does show I still have liver disease as my counts are in to 80 to 90 range so I guess I will be watching that one for improvement if my counts ever increase I guess that would mean my liver is improving.
Good luck all
-
Congrats Lynn thank you for all your support and in out on this forum
-
FYI: I contacted Gilead online and reported my after treatment side effects and they called me. We discussed what was going on and then this week my doctor's office called as Gilead contacted them. This is promising to know Gilead is actually following up.
I am still weak, fatigued and not my old self, but day by day a little more energy and improvement is happening so I am very hopeful
Just wanted to pass that on to all of you and encourage you to contact Gilead if you are experiencing negative health issues after treatment, in spite of being cured and having perfect blood work.
Enjoy your weekend!
Katie
-
Fortunately for me I had no side effects from Harvoni only from Ribavirin induced anemia which resolved quickly after I stopped the meds. Even on interferon and Ribavirin after treatment I am not aware of any sides from all 5 of my treatments.
Glad to hear Gilead is working with you how you are feeling better every day I know not everyone is as fortunate with side effects as I have been
-
Thanks Lynn and I really find it strange myself as I felt great except for about 10 days on Harvoni and this has been worse than before treatment. I was expecting a thyroid issue or some other health problem beyond the tx but with how everything turned out, it has to be from the treatment. I have received many benefits from the treatment as well. One silly thing is, I have my eyelids back! All the puffiness is gone so I may just have to try makeup again (kidding)! No worries. I just keep marching forward. I felt reporting it was the right thing to do since others seem to be having issues as well and I still feel we are their final test group.
Good hearing from you and another congratulations on your results.
Katie
-
I had major side effects during 24 weeks treatment and now that I am 14 weeks post, I still have bouts of dizziness and sometimes I am feeling unwell overall. These sides would not bother me so much if I get cured,, I'll deal with them afterwards.
These sides seem to vary amongst the patients. During my Interferon trials, I had major sides and had to quit after 24 weeks on both trials. Some others like Lynn who just mentioned she had none were able to finish their treatments without being unduly bothered. For me, Harvoni is worth suffering through because of the much lower intensity of sides and much better chances to clear the virus.
Finally, the waiting game is what's killing me! My recovery hinges on my 12th week blood test and I have to wait 3-4 weeks for results. I am stuck wondering if I can get into my next step in life!
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Katie you are not alone I was on harvoni for 21 wks. I was to take it for 24 wks. but doctors ended my treatment because of difficulty with my eyesight becoming very blurry and there was a concern for my safety driving. At 14 wks. I was found to be virus free, on the 18th. of August I am to have a blood test 5 wks. after treatment. Hopeing for the best, but as Katie I to have less energy than I did before treatment with harvoni, my blurry vision has cleared up some but still more blurry than it was before treatment. I do have less abdominal discomfort from what I had before treatment that is a big plus. Now it's just waiting for results when I have blood test on the 18th.
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Camper, please report this to Gilead! The more they hear, the better for everyone. Good luck with your upcoming results and keep us posted.
Katie
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I feel for all of you post treatment who are not feeling well. It is disappointing to hear to say in the least. I have asked on 3 different forums basically what it's like to be cured and so far I have heard little results. When I do hear it is not positive and gives me little to look forward to. What I had hoped to learn is that people feel good after treatment and they are finally living a life with more energy(to the extent their liver injury will allow), less chronic illness depression and generalized pain not to mention other hep c symptoms. I am pissed in general. So we clear the virus but life is no better? I want more time with my family. I want to be able to go somewhere and not worry I am going to collapse from exhaustion. I wanna feel like I can study or work a full day like anyone else does without this freaking disease. Thank God we can clear the virus now but it sure as heck would be nice to know I was actually going to have some kind of life afterwards.
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I finished my 8 weeks treatment on February 20 (successfully) and I did not feel good at all (high blood pressure, anxiety, etc.-which I never had, and just generally feeling crappy).
BUT beginning around the middle of June I finally started feeling normal and good-I have been going to gym 4x a week since then which I couldn't do from middle of treatment until mid-June. I have my old energy back and I am so grateful.
Just saying this hopefully to show that the crappy part doesn't last forever and hope that everyone's after effects go away sooner rather than later.
Pattie
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Lola...many on this forum are having no issues and feel better than they have in a long time. Some who were feeling crappy after being cleared of the virus are now saying their energy has returned. It is very different for everyone so please don't assume you will not see improvement. I am not depressed by this as I am confident I will wake up one day and go WOW, this is what I've been waiting for. I am basically very healthy in all areas, no cirrhosis either, thyroid perfect all bloodwork good and take no medication so it is just strange that I feel this weakness. Like I said, each day I feel a bit better so please don't give up before you've started! My only health issue not related to treatment is joint issues, and each one of them is from an injury sustained due to the physical work I did 20 years ago. Osteo arthritis has set in but I have dealt with it for a decade so am used to it.
Good luck, be healed and here's to feeling brand new again!
Katie
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1. SVR12
2. 8wks
3. tx naive
4. 1a
5. F-2
6. 3.7M
As my doctor waved off the SVR4 test, it has been a long wait to be able to add my positive results to this thread, but count me in.
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A wonderful way to start off this week Motor! Congratulations....You did it! Welcome aboard! :D :o ;D ;) :D
Katie
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Finally, the waiting game is what's killing me! My recovery hinges on my 12th week blood test and I have to wait 3-4 weeks for results. I am stuck wondering if I can get into my next step in life!
Holy cow Mario is it starting to take a month to get HCV PCR test results back here in Canada. I guess it is time to invade the Cayman Islands take over the banks and get some of the gold and money many people have been squirreling away there since the Cons took the reigns. Maybe that way we can pay for a few more test kits and the people to use them.
I have my 12 week EOT PCR test happening on August ten and if it takes another month to know if I am clear I swear I will go crazy and start writing some satire songs about Canada and the CONS. Youtube does not discriminate, political satire is beneath me but I might get IN THE MOOD
(sorry Benny and the American music publishers but we Canadians might just have to resort to a little PIRACY)
I am back playing and writing song lyric and music libretto for the first time since I was in my teens so believe me I will do it!
Keep your stick on the ice!
Eric
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Hello Everyone.
I wish I could take credit for this work but the credit goe's to "Bixter" for taking the time to sort through the posts to bring us an updated stats page. Also, Thanks to Charly8 as well, for getting this thread started, where ever he may be.
PAPPY
1. 12 wk post EOT VL status - Detected VL 7.867179 RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Unknown
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - Unkown
Lukey
1. 6 wk post EOT VL status - Detected VL of 782,040 RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - 5.7 mil
Juan_81
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) – 47.000
PaulG
1. 12 wk post EOT VL status - Detected RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown (F3 12 years ago)
6. Initial VL (date) - 2.5 mil
Dragonslayer
1. EOT det 29, 7.5w EOT <12, 11w EOT UND – SVR12, SVR24
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2013)
6. Initial VL (date) - 2.4 mil
Momof3
1. 4 wk post EOT VL status – SVR4, SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status fibroscan jan -15: F0-F1
6. Initial VL (date) - 689,594
Connie
1. EOT 4w VL status – 6000 VL RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis: F2
6. Initial VL (date) – 700,000 (1996)
Valance
1. 12w after EOT: SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis: ?
6. Initial VL (date) – ?
DeeDee
1. 12w after EOT: SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis: F0/F1
6. Initial VL (date) – ?
Reek34
1. EOT VL 1.1 mil (but decreasing alt), retest at 4w EOT UND: SVR4
2. Treatment duration - 8 wks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis: ?
6. Initial VL (date) – 500.000
catniss
1. 6w after EOT: SVR6
2. Treatment duration - 8 wks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – ?
5. F1-F4 fibrosis: ?
6. Initial VL (date) – ?
ppm
1. 12 wk EOT VL status – SVR12
2. Treatment duration - 8 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (12/14) - F0
6. Initial VL (12/14) 4,700,000
superfreak
1.12 wk EOT VL status – SVR12
2. Treatment duration - 8 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (12/14) - ?
6. Initial VL ?
MYCACHE
1. UD 4wk during treatment. 12wk EOT VL 100,000, RELAPSE
2. 8 weeks
3. tx naive
4. Genotype (1a)
5. F1 01/01/2014
6. Initial VL 100,000 12/1/2013
hope4cure
1. 12 w EOT SVR12
2. 8 weeks
3. tx naive
4. Genotype ?
5. F0-F4: ?
6. Initial VL ?
anniemybaby
1. 12 w EOT SVR12
2. 8 weeks
3. tx naive/experienced?
4. Genotype ?
5. F0-F4: ?
6. Initial VL ?
EleanorB
1. 4 w EOT SVR4
2. 8 weeks
3. tx naive/experienced?
4. Genotype ?
5. F0-F4: ?
6. Initial VL 500.000
Karen1124
1. 12 w EOT, 424.000 VL RELAPSE
2. 8 weeks
3. tx naive/experienced?
4. Genotype 1A
5. F0-F4: 2
6. Initial VL 2 mil
Tiger
1. 12 w EOT SVR12
2. 8 weeks
3. tx naive/experienced?
4. Genotype 1b
5. F0-F4: 2
6. Initial VL 500.000
grodeestok
1. 12 weeks eot undetected, SVR12
2. Tx 8 weeks
3. Tx naive
4. Geno 1a
5. F1 Jan 2015
6. 500,000 Jan 2015
Wilson
1. 18 weeks eot undetected, SVR18
2. Tx 8 weeks
3. Tx naive
4. Geno ?
5. F1-F2
6. 2 million
Espo2
8 wks post tx , undetected after 8 wk tx
Genotype 1b
Tx experienced
Initial VL 4.7m
F0
8 weeks treatment: 16/22 SVR = 72,7%
---------------------------------------------------------------------------------------------------------------
Here is the 12 week treatments:
Mm
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL (date) – 5.9 mil
Nicole_1234
1. 12 wk Post EOT VL status – SVR12, SVR18
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - 0.65 mil
JillLynn
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - 1.5 mil
Kate0b1
1. 12 wk Post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
Katie
1. EOT det >15, 8 wk Post EOT VL– SVR8, SVR16
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - no cirrhosis
6. Initial VL (date) - 2.6 mil
Islandgirl
1. 4 wk Post EOT VL status – SVR4
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
JoeK9999
1. 12 wk Post EOT VL status – SVR12, SVR24
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2012)
6. Initial VL (date) - 3.8 mil
Long_Haul
1. 12 wk Post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F4 (2000)
6. Initial VL (date) - NA
terih
1. 3 wk Post EOT VL status – Det. 414,111 - RELAPSE
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2-F3 (11/2014)
6. Initial VL (date) - 2.56 mil (11/2014)
marv777
1. 12 wk Post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) - 6 mil
Paleface
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1-F2
6. Initial VL (date) - 5.7 mil
Cally Balmoral
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - Unknown
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) – Unknown
Jonny_Wayne
1. 12 wk post EOT VL status 1,7 million - RELAPSE
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F4
6. Initial VL (date) – Unknown
DLedin
1. 12 wk post EOT VL status - SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) – unknown
Dandelion
1. 4 wk post EOT VL status - 510000 RELAPSE
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - F2-F4 Fibrosure
6. Initial VL (date) - 6.5 mil
Anand
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Initial VL (date) - 1.18 mil
Mikee
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) – 2.8 mil
Mike Cornwell
1. 4 wk post EOT VL status – SVR4
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Initial VL (date) – 11 mil
007GUY
1. post EOT VL status – SVR4, SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) – ? mil
KATE101
1. 6 wk post EOT VL status – SVR6
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – F2
6. Initial VL (date) – 1,5 mil
MEG
1. post EOT VL status – SVR4, SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced –
4. Genotype (1a or 1b) - 1a, TT
5. F1-F4 fibrosis status (date) – F0
6. Initial VL (date) – 2 mil
workingonit
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) – ? mil
HCVDX30
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1a
5. biopsy 2013 F4
6. Initial VL (date) – ? mil
Charly8
1. 4 wk post EOT VL status – SVR4
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx Experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status - Fibrosure- F3 (Dec 2014), Fibroscan F0-F1 (Mar 2015)
6. Initial VL (date) - 1.05 Mil (Dec 2014)
Bituman
1. Post tx results: SVR4, SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status - biopsy- F1 (2007)
6. Initial VL (date) – 3.59 Mil (jan 2015)
ROGER
1. 4wk - UND / 12 wk – UND, SVR12
2. Treatment duration - 12 weeks
3. tx naive
4. Genotype 1a
5. F3 fibrosis status - 11/21/2014
6. Initial VL - 313,593 11/21/2014
MARNIE
1. 4wk EOT VL status = SVR4
2. Treatment duration = 12 weeks Harvoni
3. Experienced
4. Genotype 1a
5. F1 fibrosis status (Jan 2015)
6. Initial VL 1.1million Dec 2014
BOB V
1. 12wk EOT VL status = SVR12
2. Treatment duration = 12 weeks Harvoni
3. Experienced
4. Genotype 1a
5. normal liver by ultrasound 2014
6. Initial VL 3,5 million
Perca05
1. 4WK EOT VL: 20 (AST 19 ALT 15), 12 WK (AST 20 ALT 15), SVR12
2. Treatment duration: 12 Weeks
3. tx naive or experienced: Experienced
4. Genotype (1a or 1b): 1a
5. F1-F4 fibrosis status (date): not known
6. Initial VL (date): Starting VL was 4.5 million
TerryLF
1. 2w EOT VL status: 120 = RELAPSE?
2. Treatment duration = 12 weeks Harvoni
3. naive
4. Genotype: ?
5. F4
6. Initial VL: 100.000
Junkyard
1. 4wk EOT VL status = SVR4
2. Treatment duration = 12 weeks Harvoni (plus riba)
3. Experienced
4. Genotype 1a
5. Liver status: ?
6. Initial VL 960.000
CHepCFree
1. 4wk - 12 wk EOT VL status – SVR4?
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1
6. Initial VL (date) 7,200,000
Ollie
1. 12 wk EOT VL status – SVR12
2. Treatment duration- 12 weeks
3. tx naive or experienced-naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) F1 -1/08
6. Initial VL (date) 600,000 when starting Harvoni in Dec. 2014
texasone
1. 4 wk and 5 w EOT VL status – RELAPSE
2. Treatment duration- 12 weeks
3. tx naive or experienced-naive: ?
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) ?
6. Initial VL (date) ?
Tutu
1. 12w EOT– SVR12
2. Treatment duration- 12 weeks
3. tx naive or experienced: naive
4. Genotype 1b
5. F1-F4 fibrosis status: F3
6. Initial VL (date) ?
Grateful 52
1. 4wk EOT VL status SVR4
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4 fibrosis status unknown, ultrasound only- showed nothing
6. Initial VL -1 mil in mid 2014, likely infected 1972.
Atomic dog
1. 4wk EOT VL status SVR4
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4: F2
6. Initial VL -1,5 million
HHburme
1. 12wk EOT VL status: 3 million RELAPSE
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4: F2
6. Initial VL -1,5 million
Barbs
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni + Ribavirin
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - Nov 2014 - 1.8 million
amy1662
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – F1/F2
6. Initial VL (date) - ?
Coloradogirl
1. 4 week EOT status – SVR4
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – 580.000
Bestmomy
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – 1,8 mil
Karen3717
1. 4 week EOT status – SVR4
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2
6. Initial VL (date) – 316.000
GLCII
1. 4 week EOT status – SVR4
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL (date) – 12 mil
Pete
1. 4 week EOT status – VL 3361 RELAPSE
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – ?
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – ?
tm
1. 4 week EOT status – SVR4
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – ?
moma
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – ?
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – ?
Mike2
1. 7 wk EOT VL status Undetected!!! SVR7
2. Treatment duration: 12 weeks
3. tx naive
4. GT ?
5. fibrosis: ?
6. Initial VL:?
gug
1.12 wk EOT VL SVR12
2. Treatment duration: 12 weeks
3. tx naive/experienced:?
4. GT 1A
5. fibrosis: 1-2
6. Initial VL:46 million
belgianista
1.6 wk EOT VL SVR6
2. Treatment duration: 12 weeks
3. tx naive/experienced: TE
4. GT ?
5. fibrosis: Fibrosure F4, Fibroscan F0/F1
6. Initial VL:?
icantwait
1.12 wk EOT VL SVR12
2. Treatment duration: 12 weeks
3. tx naive/experienced: ?
4. GT 1
5. fibrosis: F3
6. Initial VL: 3,5 mill
amy1662
1.12 wk EOT VL SVR12
2. Treatment duration: 12 weeks
3. tx naive/experienced: exp
4. GT 1a
5. fibrosis: F1-F2
6. Initial VL: ?
Bixter
1. 6 w post EOT: SVR6
2. Harvoni 12 weeks
3. Tx experienced
4. 1a
5. F3
6. 1.8 M
mdj
1. 4wk EOT VL: SVR4
2. Treatment duration-12 weeks
3. tx naive
4. Genotype 1a
5. fibrosis status F3/F4
6. Initial VL (2.1million/Oct 2014; retest 700,000/March 2015)
SunisOut
1. 4w EOT und, 8wk EOT VL: 270, RELAPSE?
2. Treatment duration-12 weeks plus riba
3. tx naive
4. Genotype 1a
5. fibrosis status F4, A3
6. Initial VL 5.9 m
apache
1. 4wk EOT VL: SVR4
2. Treatment duration: 12 weeks
3. tx naive
4. Genotype 1a
5. fibrosis status: F0-1
6. Initial VL: 2.94 million
xkilo
1. 12wk EOT VL: SVR12
2. Treatment duration: 12 weeks
3. tx experienced
4. Genotype 1a
5. fibrosis status: F3 (Jan2015)
6. Initial VL: 13 million (Jan 2015)
PatEquack
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-
6. Initial VL (date) - 3 mil
Blue
Undetected 12 week post EOT
Tx experienced
1b
F1
Initial VL 4.8
motor
1. SVR12
2. 8wks
3. tx naive
4. 1a
5. F-2
6. 3.7M
12 weeks treatment: 53/60 = 88,3%
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GLCII, Bixter, Charly8. Thank you very much for all the thoughts and effort to keep us informed on the group status. It's really appreciated and it helps keep everyone hopes up! Kudos to you!
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Good Job guys! Thank you!
I noticed a couple not listed. Is this because they went the 24 weeks?
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Yeah what about the 24 week treaters am I the only one reporting in so far?
But thanks for your efforts GLCII and all who helped compile the list
Has anyone crunched the percentages of this unscientific poll?
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I believe there are a couple more, Lynn. MEL for one. Ma too.
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I'm a 24 weeks and I did report SVR 4 undetected. I am waiting for my 12 weeks test results soon.
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Great job, guys, but I belong in the 8wk treatment group.
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Hi Lynn, Katie and Mario!
Here's what I have about other than 8 and 12 week treatments:
16 weeks:
SAM1224
3.5 wk undetected post treatment - SVR3,5, SVR12
16 weeks Harvoni
tx naive or experienced: naive
Gt 1b
F4 fibrosure 2014
6. Initial VL: 3million 2014
jacattack
SVR4 – 13w eot <15 deteced RELAPSE?
16 weeks Harvoni
tx naive
Gt:?
Fibrosis status: ?
VL: ?
16 weeks treatment: 1/2 = 50%?
20 weeks:
cate
1. 4wk EOT VL status = SVR4
2. Treatment duration = 20 weeks Harvoni
3. naive
4. Genotype 1a
5. early cirrhosis
6. Initial VL 2,5 million
20 weeks treatment: 1/1 = 100%
24 weeks:
ma snart
1. 8wk EOT VL status = SVR8
2. Treatment duration = 24 weeks Harvoni
3. Experienced/naive; ?
4. Genotype 1b
5. Fibrosis status: ?
6. Initial VL 8,5 million
Lynn K
1. post EOT VL status: SVR4, SVR12
2. Treatment duration Harvoni 24 weeks, Ribavirin 15 weeks
3. tx naive or experienced: Experienced (5th treatment)
4. Genotype: 1a
5. F1-F4 fibrosis status: F4 Cirrhosis 01/08 Biopsy
6. Initial VL: ?
mario555
1. 4wk after EOT VL status: SVR4
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: Experienced (3rd treatment)
4. Genotype: 1a
5. F1-F4 fibrosis status: F4
6. Initial VL: 8 mill
mikeyman
1. 12wk after EOT VL status: SVR12
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: Experienced (3rd treatment)
4. Genotype: 1
5. F1-F4 fibrosis status: F4
6. Initial VL: 1,529,773
24 weeks treatment: 4/4 = 100%
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Katie, I did not include Mel because she was first on another treatment and then switched to Harvoni.
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Just got my 12 week labs back!! Count another one down. Undetected and no anemia, blood counts are normal, AST is a little high but stable.
Dr. said I will see you in 12 weeks.
Wow, this is overwhelming. I just did not think it would ever happen.
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Hi Lynn, Katie and Mario!
24 weeks treatment: 4/4 = 100%
Thanks Bix. I hope to add my name to that list fairly soon as soon as Canada can afford a few more test kits. Either that or mortgage my house and go down to the states for more frequent vl testing. ARRRGGGHHHH!
Eric
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Katie, I did not include Mel because she was first on another treatment and then switched to Harvoni.
Thanks Bixter. I just didn't want anyone left out after everything they went through. This took some time and something I was actually thinking about doing but didn't follow through. You ROCK! Thanks again.
Katie
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Now please want some describe what it feels like to be hep c freeing listening. I want to know would love to know I can get my life back.. Really depresses on last
Reese weeks of treatment need positives proud of all of you
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Just got Helen's SVR12 results, NOT DETECTED!!!!
after 25 year or so, failed interferon treatment, viral loads in the millions, f4 cirrhosis, and now CURED,,,,,
Wow
You guys have been a great source of info, will keep you posted as the months progress now.
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I don't think I have seen anyone reaching SVR4 and then relapsing between week 5 and 12. Am I wrong? If there is no one, does that mean SVR4 would be the end point?
Anyone who knows somebody who got to be UND and then relapsed "after"?
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I think there was someone but would have to do a lot of searching. Give me some time on that. I could be wrong.
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I hadn't seen this post before and I don't like it (however not sure if that is a 24 wk post test or the 12 week post):
As a follow up to a conversation I had with Charly8: My doctor started treating her first batch of 70 patients with Harvoni at the end of 2014, so they are now taking their 24 week labs. All 70 arrived at undetected by week 12, but today she told me only 1 of them has relapsed. So I guess it happens - there are some people with resistance. Luckily, there are new drugs on the way, so even for those, there is still hope.
Lee
+++++++++++++++++++++++++++++++++
I have found a couple who relapsed who were UND during tx or EOT but did not have a 4 or 8 week test but went for 12 wk post and were DETECTED.
Maybe someone else has better information for you.
I believe the 12 week is the one to be concerned with due to the replication time but heck, to have consistent UD test results is a great trend so don't worry too much. Waiting always brings about doubts. It is normal.
Katie
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lola
To me being hep c free means not having to feel toxic and a danger to others if I get cut at work I work in a machine shop.
Being free means I can expect to likely have a normal life span and die from something other than my advanced liver disease.
Being cured means my liver cirrhosis wont progress and I will likely not need a liver transplant in the future or suffer a slow death from liver disease.
Being free means having my life to live again and not wondering when I will go into liver failure and totally lose any quality of life
Being cured means being free from fear of early death
So was treatment worth it to me? oh yes absolutely without a doubt!
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Thank you for helping me out things in perspective Lynn k. I honestly think riba rage has taken a toll on me and I have been more negative than I normally would be
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lola
To me being hep c free means not having to feel toxic and a danger to others if I get cut at work I work in a machine shop.
Being free means I can expect to likely have a normal life span and die from something other than my advanced liver disease.
Being cured means my liver cirrhosis wont progress and I will likely not need a liver transplant in the future or suffer a slow death from liver disease.
Being free means having my life to live again and not wondering when I will go into liver failure and totally lose any quality of life
Being cured means being free from fear of early death
So was treatment worth it to me? oh yes absolutely without a doubt!
This is one of the most powerful posts on this entire message board.
Bob
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Well it looks like my liver is in better shape than it has been in a very long time.
I will not know for certain until the last week in August if I am SVR 12 though.
But with this liver panel that only has minor anomalies in bilirubin but the conjugated fine I am not too concerned.
Albumin 45 35-50 g/L
Total Bilirubin A 21 <20 umol/L
Conjugated Bilirubin 6 <8 umol/L
Alkaline Phosphatase 69 48-138 U/L
Gamma GT 35 <59 U/L
ALT 26 <60 U/L
AST 30 <35 U/L
Thyroid Function
TSH A 4.3 0.27-4.2 mU/L
So there is most likely no more damage going on from HCV. But we will see. The tsh being up does not mean squat though because last month it was in the low 3s so that med is not an issue.
I promise something special if I am svr 12
Cheers and tears
Eric
PS
And kudos to you Lynn for describing what it means to be free of the Dragon. For me as well as possibly working productively again, it also means that my dreams of effectively performing the music I love after I retire might come true!
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Great news Eric looking good!
Awww shucks thanks Bob and Eric
I too have dreams of post retirement career change.
Now I have a possibility to live long enough to try to reach for the sky!
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hey guys, I've been mia for a while but this thread makes me so happy, thanks for keeping up with this, its a lot of work (really happy its not me doing it), but its so important for us to know where we all stand and how far we have come. thanks again and congrats to all us :-* PS anyone heard from mel?
kate
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Hi, just wanted to post my results. I've been watching for awhile. I did 12 wks of Harvoni. 1b, F4. 4wks. post..undetected. Will check in the last wk. of Sept. for post 12 wk. results.
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Baffled, Congrats on the 4wk. SVR!! That is great news! Hope you are feeling well and life is rocking right along for you! Teri
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Thank you..I'm still afraid of relapsing, but happy for now. I'm so sorry you didn't make it..It's been hard watching people relapse and knowing how they must be feeling. I'm doing better now.I hope you have plenty of time to find a new treatment. Good luck!!!!!
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Hello everyone,
I just learned today that I am CURED. I am a little overwhelmed with emotion at the moment, and you guys are the first to know. Thanks to every one of you for sharing your stories and experiences, good and bad. I feel a great deal of compassion for this group even thought I didn't say much along the way.
Love to you!
cate
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Cate! Whoopppeeee! Congratulations and it's time to Celebrate your success! So do something wonderful for yourself. Get a massage or go fishing or buy yourself some flowers; whatever you enjoy!
It is wonderful to see our brothers and sister's starting their new life and important to encourage those who will need to try again. This forum is such an important part of this treatment, so stay in touch!
Katie
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Thanks all for the encouragement. I hope that we all get our lives back. I had a liver transplant 10 years ago and had hoped that was the end of the hepc. But it was back in 6 mos. But with Harvoni its going to be different for all of us I hope. Being positive and sharing with each other, in my mind, is the most important thing for all of us.
Hey Cally, You're the first one I've seen on this site who's had a transplant, like me. Are you taking or did you take ribavirin,also. I've read on Drugs.com that it may have bad side effects when mixed with cyclosporin... My immunosuppressant. Riba has about 5 pages of side effects. I'm in the middle of my 5th week of Solvaldi and riba and my last Btest said <15 and "Not Detected" I called Gilead and they transferred me to a support nurse and she stated she'd never heard of anyone taking the meds post transplant. After we hung up she called me right back and wanted my address and everything...LOL!
Had my transplant in 2011. Best wishes....
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1. 10 wk EOT VL status - Undetected!
2. 8 wks
3. tx naive
4. Genotype 1a
5. F1 - Biopsy November 2014
6. Initial vl 900,000 - November 2014
Was worried I had possibly relapsed due to continuing discomfort in my right ribs. I took my lab order in to get results early because I was tired of waiting and worrying. I am happy to report these results and will follow up with doc in Sept as told and will ask him then about when I should do a follow up test.
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Another one bites the dust. I got my 12 weeks after treatment results this morning and UND. This was my first test since the EOT test which was UND so I've been sweating for a while waiting for results. Over 40 years of Hep C gone and it looks like I got out without major liver damage.
1. EOT - UND / 12 wk – UND, SVR12
2. Treatment duration - 12 weeks
3. TX Native
4. Genotype 1b
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No numbers sorry. I'm 4 1/2 months past the end of my 12 week treatment and my status is undetected. I'll post numbers tomorrow.
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I love all of the numbers coming in! Congratulations to all of you!
Katie
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Well I had my 12 week post Tx VL draw 3 days ago. Driving down the road today I got a call from the Doc; I'm cured!!
I don't have any of the numbers from any tests yet but I *can* mention I was still detected at 4 weeks. I'll post more later.
Meanwhile...The Dragon can go suck eggs 8)
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CONGRATS LeDoc!!
kim :D
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Thanks Kim. I'm pleased to say the least. It hasn't fully sunk in yet. At this point I am cautiously optimistic though my gut tells me all is well. I still have cirrhosis (no exact numbers, I'm told it's on the real low end and, my tests have all been rock steady for the past few years. I'll continue having ultrasounds alternating with CT scans to monitor that. I also plan on having a 48 week VL done. I know the current thinking is if you're cool at 12 weeks then that's it however...it's my life and my money; I'll have the test.
Best of luck to you as well.
-d
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Congratulations Ledoc! The feeling takes awhile to settle in and then one day you realize, you're lighter feeling and less stressed and that you are no longer a biohazard and it's then you can truly celebrate! Have a wonderful life!
Katie
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Post 5 weeks of taking Sofosbuvir (generic) and Ribivirin Have some questions on blood test. Didn't see any liver readings but I'm concerned about the following
Test said <15 and not detected but what I'm concerned about is since I've had a liver transplant and on immune suppressants along with the above meds:
Hematocrit 29.7 LOW
Hemoglobin 9.8
carbon dioxide 21 low
creatinine 1.5 high
glomerular filtration rate 47 low
phosphate 2.4 low
Feel like CRAP = Extremely High
If I get in the sun and walk any amount my muscles go to mush and my heart pounds until I get inside in the cool and rest for about 5 minutes.
Blood pressure has been high - having to take around twice the normal dose.
Otherwise..LOL.. I feel great!
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I would talk to your doctor but it does sound at least partly from Ribavirin caused anemia which is causing the low hemoglobin and anemia does tend to make on feel like crap.
Being post transplant I assume you're being closely monitored by your transplant physician while you are on treatment for hepatitis C with Sovaldi and Ribavirin.
I was on Harvoni 24 weeks and Riba for 15 weeks I was on 1200 mg Ribavirin but had to dose reduce because my HGB had dropped to 9.7 and my doctor did not want to see that below 10. After reducing to 1000 mg my HGB rose to 10.1
Congrats on the not detected good luck on treatment may you make SVR forever
Lynn
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Got my 11 week EOT results back (mistake in test date and did it 1 week early) but they are thesame as my previous 6 week and 10 week during treatment results:
HCV RNA, <15 NOT DETECTED Range <15 = Normal
QUANTITATIVE IU/ml
REAL TIME PCR
HCV RNA, <1.18 NOT DETECTED Range <1.18 = Normal
QUANTITATIVE Log IU/mll
REAL TIME PCR
So I guess Im SVR 11 :) due to the date mistake. My doctor will have me come back for a 6 and 12 month test instead of repeating again in a week.
All other info is in my signature.
Thanks to all on this forum, you have been a great source of information and support.
I can say that my experience on treatment was very easy, only some headaches but increasing water and some Tylenol took care of that.
My side effects since completing tx have been much harder, a few days after completing my 12 weeks I started GI problems , off and on feeling more tired and weak. The side effects seem to be slowly getting better as its not almost every day now but Im 11 weeks EOT.
When I was on Harvoni I felt the best Ive felt in years, energy, appetite .
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Me too Sixfooter! I still am not feeling up to par and I am 24 weeks post tx.. I suggest you report your after treatment side effect to Gilead as the more info they have, the better. I asked a question online and they called both me and my doctor, so evidently they are interested.
Congratulations on your success and I hope we all get our energy back so we can enjoy being HepC FREE....at last!
Katie
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I am SVR 12
Working on a happy dance. The results came in early.
SO
Initial VL was 3 million
F4 cirrhosis
Treatment experienced
24 weeks tx
UND at EOT
UND at 12+ weeks EOT
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HIP HIP HOORRRAY! WONDERFUL NEW ON YOUR SVR12! I HAVE MY DANCING SHOES ON FOR YOU!
Congratulations and best to you!
Katie
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Awesome news Mugwump super congratulations to youuuuuuuu
Another one bites the dust!
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Congrats Mugwump,
The long Hep-C highway has come to an end!
Best wishes on your new life! Mike :)
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Mugwump - so happy for you!
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Mugwump , Chalk another one up for the good guys!!!!!Congrats. I think my personal text reflects My feelings to You & others who persevered.
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Yea Mugwump! I say Do the Dance!!! I hope to join this club by the end of the year!
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Spectacular news, Mugwump. Party on! ;D
kim
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1. 4wk EOT VL: Undetectected
2. 8wk EOT VL: Undetectected
3. Treatment duration-12 weeks
4. tx naive
5. Genotype 1a
6. fibrosis status--F3-F4 (Mar 2015)
7. Initial VL (2.1million/Oct 2014; retest 700,000/March 2015)
Will provide 12 wk results in September.
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More good news MDJ. Before long the whole hep world will be shaking from all the HAPPY DANCES! I've got seven more weeks of Tx. left , staying the course.
Yippee Ki Yay Ya'll!!!
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1. 4 wk EOT VL: not tested
2. 15 wk EOT VL: ~ 170,000
3. Treatment duration-8 weeks
4. tx naive
5. Genotype 1a
6. fibrosis status--FibroSure F1-2 A2 (Oct 2014)
7. Initial VL 2,812,380 (Oct 2014)
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@opaleye
I am so sad seeing this result. Perhaps the 8 week option needs to be dropped completely it seems that many of the treatment failures are either those who only had the 8 week option, or were borderline in need of 24 weeks but only took 12.
I see you were tx naive. So this is doubly concerning. To date Harvoni was our best shot without a doubt, here is hoping you can get on another tx plan soon. Your level of damage mirrors the level I had before my first treatment failure after tx in 2003- 2004.
Whatever happens please do not despair! It took over ten years for my liver to progress to F4 and even then I could still row my pontoon boat and cast a fly line.
I will not change my avatar to the dead dragon until I reach 24 weeks post tx undetected status, but regardless of how this works out for me I refuse to fall into a funk again in life because of HCV infection!
Keep up the fight and be kind to yourself it makes it easier to be kind to others.
Sincerely
Eric
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Thanks for the encouragement, Eric.
I am an eternal optimist and kept saying "I believe I'm cured until they tell me otherwise." Well, they told me otherwise today and I must admit it hit me pretty hard. Maybe not completely devastated but extremely disappointed for sure. I am allowing myself a day to mourn the death of Harvoni Hope, but tomorrow I will look ever outward and upwards to the Next Hope.
With you completing a 24 week treatment and being SVR at week 12, it shouldn't be long before you transform your avatar into the slayed dragon!
Take care,
~opaleye
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After waiting for 5 weeks for my 12 weeks EOT results, I finally got them yesterday :
I am EOT 12 - UND and my doctor calls it cured! Hard to believe after almost 45 years with the disease!
16 week after a 24 weeks treatment I still have sides with bouts of tinnitus and dizziness and more trouble undertaking complex work so I guess this is it for accounting... I just turned 60 so I'll try to enjoy my retirement. My wife knew I was cured because of me undertaking lots of house projects and by my level of stamina. For me, I'll cautiously wait for my 24 weeks before being convinced!
Best of luck for everyone and my best advice is to take as much medication as financially feasible. Don't let insurance clerks decide on your length of treatment.
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Big Time CONGRATULATIONS, Mario! You were one of the people whose posts I eagerly looked forward to when the "Harvoni Side effects" thread was helping me decide whether to risk trying Harvoni. Sorry about the lingering sides -- may they not prevent you from having a wonderful retirement. -Gnatty
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Congrats Mario. My daughter is starting her treatment in 8 days and I hope she will have success like you.
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Marioooooooooo!!!!!!!
That is great fantastic wonderful news treatment bro!
We started this road a week apart so HAPPY for you you made it through!
All my best to you young man just reborn!
In health
Lynn
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Opaleye,
I am new to this forum and still finding my way about. So sorry to hear such rough news, what a disappointment it must be. I was trying to find if you ever had an undetected result, with viral load <15 and Not Detected on the report?
Appreciate your perspective towards the Next Hope. I join you in hoping it will lead to SVR.
Barbara
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After waiting for 5 weeks for my 12 weeks EOT results, I finally got them yesterday :
I am EOT 12 - UND and my doctor calls it cured! Hard to believe after almost 45 years with the disease!
16 week after a 24 weeks treatment I still have sides with bouts of tinnitus and dizziness and more trouble undertaking complex work so I guess this is it for accounting... I just turned 60 so I'll try to enjoy my retirement. My wife knew I was cured because of me undertaking lots of house projects and by my level of stamina. For me, I'll cautiously wait for my 24 weeks before being convinced!
Best of luck for everyone and my best advice is to take as much medication as financially feasible. Don't let insurance clerks decide on your length of treatment.
RIGHT ON. I too still have the minor side effects you are experiencing. But I think that is because our livers needed to remove far more dead material than those people who have less liver damage. My bilirubin count is still up but here is hoping that I still have enough function left to bring the count down slowly over time as the damage levels off. We cannot forget that we have liver damage but it is certainly FANTASTIC to know that any more damage that occurs will not be from HCV.
Take good care and all the best to you.
Eric
PS I am starting a new thread for 24 week EOT test so that this thread can stay for those who reach 12, I feel that the 24 week clear or not EOT tests need to be documented as well. Like you Mario I know that I will not start to feel that things are over until November!
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Mugwump/Eric, belated congratulations on your SVR12. You were another of the people whose posts I eagerly looked forward to while I was a lurker contemplating treatment. I'm so glad you have your music-making back and you continue to share your wit and encouragement with the rest of us.
Gnatty (a former musician who loves to photograph our fellow fauna, fish included)
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Today I received the results of my testing at 12 weeks post treatment with Harvoni.
Results: HCV RNA by PCR: Not Detected.
Meaning I have achieved End of Treatment Sustained Viralogic Response at 12 weeks.
EOT SVR at 12wk
Those test results from 08/12/2015:
HCV RNA by PCR
< 15 Not Detected IU/ml
< 1.18 Not Detected Log IU/ml
~ALT 68 Normal: Reference Range 12-78
^AST 59 Mildly Elevated: Reference Range 15-37
1. Testing done at 12 wk EOT
2. Treatment was with Harvoni for 12 Weeks. 02/19/2015-05/13/2015
3. Status before treatment: Treatment naive
4. Genotype 1a
5. F2 fibrosis by liver biopsy 2008.
F4 fibrosis by FibroSURE 2015. FibroSURE is of questionable accuracy, in my opinion.
6. Initial Viral Load was only 11,256, on 01/2015. Prior viral loads where also low, in the 20,000 range.
Phil
I should add that I am 61 years of age. I likely got Hepatitis C from an occupational needle stick injury in 1987. I was diagnosed in 2008. I have experienced extra hepatic manifestations of hep c, including avascular necrosis of both hips and both shoulders, requiring a left total hip replacement and a free fibular graft on the right, and pressure directed decompressives surgeries of both shoulders. Today most people have no idea I ever had those problems/surgeries. In addition I had a pulmonary embolism, not related to the surgeries, and ARDS, which damn near killed me. I was two weeks in the ICU with a breathing tube, on a respirator. All of these problems have an inflammatory and vascular occlusive origin in general and in my case were clearly caused by hep c infection. The association between hep c, avascular necrosis, pe, and ARDS can also be seen in the medical literature, but you have to dig deep. Although the general medical community is still playing catch up, this association is much better understood than when I first started looking 12 years ago. This is common for the progression of such medical knowledge. In my case the association is as statistically certain as that my DNA is my DNA. And I don't have a twin. A young healthy person (I was 48) with no medical history can simply not get three major illnesses within a short time which do not have a unifying cause. Not going to happen. More likely to find a case of in person voter fraud in the United States of America, or get struck by lightening, 5 times.
I was out of work, on total disability, for over two years. Today I'm back to work full time. The experience was actually helpful for me professionally, although I wouldn't recommend it on that basis alone.
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It worked!!!!! I feel great. It took about 5 months after EOT on Harvoni before
side affects wore off. (dizziness mainly).
Congratulations Joe!
It is my opinion however, that we should stop thinking about the prolonged recovery time after a cure with Harvoni as "side effects" and start thinking of it as what is is. Recovery. So you had a virus, you took a medication, that medication killed the virus. Now your body has to recover. From the long term effects of the virus and the short term effects of medication. It's not like taking penicillin for a strep throat, slam bam thank you penicillin. Many of us have had hep c for 20-40 years. So long that many of us have forgotten what normal felt like. The hep c virus causes a lot of havoc over that time. It's not at all surprising the recovery is prolonged. I would guess 6 months to a year, perhaps longer depending on the chronic effects of the virus on an individual. Maybe 2 years for some. We don't know. The human race has never before experienced mass cure and recovery from a prolonged chronic viral infection. Never happened before. New territory. But it's not side effects necessarially. Side effects occur while taking a medication. Once the medication has cleared the system that's done. Gone. Even if the side effects persist. Now if a medication causes damage to some body system, well that's one more injury involved in recovery. Even if initially an effect of the medication. My point is some folks, not picking on you Joe just sayin', want to attribute every not so great thing they feel to Harvoni, neglecting the illness and recovery, which in and of itself is plenty to cause you to feel like crap for a good while. I'm not saying Harvoni has no significant side effects. I'm sure it does. It's a pretty damn powerful chemical. However no matter what, most of us are not going to feel recovered just because we are cured. Recovery takes time.
I myself at 14 weeks post Harvoni, with a SVR12, have just this week felt I have turned the corner in that process of recovery.
Phil
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Right on PHIL!
I think we should all see if we can get new scans done next year to see if the density status of our livers changes at all. I am sure that the GI's will be studying the results on the liver of those who have had the miracle cure just in time.
I firmly remember how having a status greater than F2 greatly reduced the possibility of success with Interferon tx! So no doubt how well our livers actually heal after successful Harvoni tx should make a very interesting item for clinical study to say the least.
Best wishes in what ever you do going forward!
Eric
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Phil, congratulations on your SVR. Thank you for your cogent exposition of the distinction between side effects and recovery.
Gnatty
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Good news and bad news.
Bad news: The stock market fell 1000 points this morning.
Good news: SVR12!!!
Keeping it in perspective daily = Life is good!
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Colorado girl congrats for your SVR!! I just received the same news Friday and I am just starting to process the first few days of my new life! Haven't figured it well yet...
As for the bad wake up news about the market it's a hidden gem! Gilead is down to 100 and is worth 120+. Buy, buy, buy....
In any case, I'm happy for you and good luck!
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Colorado girl congrats for your SVR!! I just received the same news Friday and I am just starting to process the first few days of my new life! Haven't figured it well yet...
As for the bad wake up news about the market it's a hidden gem! Gilead is down to 100 and is worth 120+. Buy, buy, buy....
In any case, I'm happy for you and good luck!
I am so happy for YOU too, Mario! I understand how you feel about the first few days of your new life. I don't know what I want to do when I grow up, either. ;-)
I hope we see more of you all reporting an SVR12, too. Want to take you all with me!
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Doesn't seem real does it? After so many years. I mean the SVR. The stock market is all about China's troubles. Life's a tricky business all around.
Congratulations to all the new and old cures. Understanding and dealing with recovery is the next challenge for those with SVR. The medical community by nature will not have any particular interest in this part. Nothing to fix. Folks here sharing and documenting the experience will be useful information. Hope everyone is doing well.
Phil
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SVR12 undetected.
1b
everything normal
except of course F4 (did not expect any change here)
treatment naive
Still having ringing in ear (singular because my other one has never worked since early childhood)
I was diagnosed with Menier's long ago.
Other than that I feel great!
Best wishes to all.
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Congratulations, Phil! Even though the market went south, I'm smiling and content.
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Congrats TTSP. May you live long and prosper!
Must have been hell to be deaf in one ear and have tinnitus in the other! Although it's been coming down, I still have tinnitus in one ear 2-3 times a week (scale 4 compared to 8 during treatment) even after 17 weeks post treatment. I prefer to deal with this rather than hep c.....
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Thanks coloradogirl. I live primarily in the south so if the market goes south no big deal, for us. Doesn't help my work and second home in Montana though.
In recent weeks I've been having longer and longer flashes of what it once meant to be normal, not sick with that insidious illness which is the chronic inflammatory state of hepatitis c. I'm even beginning to remember what it felt like to have plans and dreams for the future. Something I must have lost over time. So gradually I hardly noticed. Psychological or physical, likely both. In any case the future seems to open up as a place of possibilities, not a place of progressive illness. Odd thing that, after all this time.
Phil
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Congrats to all the Undetected!!! :D 8)
Harvoni might not slay all the dragons but it surely is a much sharper sword than the previous weapons!
@Barbara, No, I never did have an Undetected result. My doctor considered > 15 Detected as "negative" since, as the PA said, 'everyone who is > 15 during treatment clears the virus after treatment.' Well, almost everyone. I also was their only patient who reported numerous side effects. I wonder if there is a correlation between side effects and success of the treatment? I had these odd visual disturbances that were a rare reaction to Sovaldi. I wonder if that sensitivity to Solvaldi meant it wasn't effective?
I had my primary doctor run labs for liver functions. My AST/ALT numbers were about 10 points higher than before Harvoni. (They have remained steady for the last decade.) So, my viral load got knocked down significantly but damage is still being done. Maybe even a bit worse than before.
Has anyone heard anything about options for Harvoni Relapsers? I wonder I should ask my insurance company about Viekira Pak?
Congrats again to all the responders!! :)
~opaleye
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Opaleye. I am really sorry to hear about your relapse. Here are my thoughts about the treatment.
Harvoni has Sovaldi as a "nuke". This product is the "magic" component in the pill. You haven't cleared the virus during your whole treatment, it never came down to UND. My feeling is that a longer treatment would not work, you don't seem to respond to that product. You are right in saying that this is the 1st known case like that. I would therefore not try Sovaldi combination again.
You could go with Viekira packs. I know they use a different "nuke" (nucleotide) to fight the disease. You might have better luck. Unfortunately, Viekira seems to be harder to take and has more side effects than Harvoni.
You could also wait to see what other companies are coming up with in the next 18 months. Mercks, Regeneron, etc, have products close to being ready. Given the fact you seem to have a little bit of time to check things out (level of fibrosis).
I would suggest you wait a bit so as not to get into another treatment based on panic or rebound. If you search and investigate the new products, compare their results, pack up some cash and get into your new future treatment well armed, you might be more successful the next time around . It is really easy for me to say that, I am not in your position! Also, don't let insurance companies determine lengths of treatment for you! The 8 weeks treatment sounds good but, for the other who failed, it's a major problem! Best of luck to you...
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. . . No, I never did have an Undetected result. My doctor considered > 15 Detected as "negative" since, as the PA said, 'everyone who is > 15 during treatment clears the virus after treatment.' Well, almost everyone. I also was their only patient who reported numerous side effects. . . .
Has anyone heard anything about options for Harvoni Relapsers? . . .
Opaleye, I am very sorry that you not only suffered numerous side effects but also did not clear the virus. Lynn K answered someone else's question about options for Harvoni relapsers here: http://forums.hepmag.com/index.php?topic=3160.msg26371#msg26371
As Mario wrote, many new treatments are nearing approval (see http://www.hepmag.com/articles/hepatitis_c_drugs_2502_27568.shtml for more info). I hope your hepatologist will be able to guide you to a treatment that will cure you.
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@ Mario and gnatcatcher,
Thanks so for the advice and information. I waited over a decade for a better treatment, what's another year or two, right? ;)
~opaleye
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I just got back 3 of the 4 tests I had done for my 12 week post TX. Though the one I'm most interested in is the HEPATIC FUNCTION PANEL posted below. These numbers make me feel pretty good about the HEPATITIS C QUANT RNA PCR that will be here in a couple days. I'm amazed at how hard it is to click open the results when they arrive. Just before clicking open the results, my heart started racing.
AST/SGOT <35 IU/L 19
ALT/SGPT <78 IU/L 19
PROTEIN TOTAL 6.0 - 8.3 g/dL 7.7
Albumin 3.7 - 4.8 g/dL 3.4
Bilirubin, Total <1.2 mg/dL 0.3
Bilirubin, Direct 0 - 0.3 mg/dL 0.1
Alkaline Phosphatase <130 IU/L 75
Globulin 2.5 - 4.1 g/dL 4.3
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Its been awhile since I am been on the board But....Just found out SVR 13 because I was away.... is Undetected. I am CURED!!!!!! The most amazing feeling in the world. After the previous failure of over a year interferon and the 12 week harvoni....Speechless... :) :) :)
1. 4wk EOT VL: Undetectected
2. 8wk EOT VL: Undetectected
3. Treatment duration-12 weeks Harvoni
4. Previously Relapsed after 62 weeks on Interferon/ribravarin 2007
5. Genotype 1a
6. fibrosis status--F2-F3 (Jan 2015)
7. Initial VL (2.5million))
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Opaleye, So sorry. Please don't be offended but I was somewhat relieved that it wasn't really a relapse but a failure to clear the virus. Some failure of the drug to work with your body chemistry perhaps. Each relapse unnerves me, as I could be next. I can't follow your footsteps as I am not detected. Hoping to stay that way.
I was surprised to read the suggestion that <15 detected was considered negative, all my results say <15, then not detected. Don't know what to make of any of it but agree with Mario, a low level of fibrosis can allow you to buy time for the next round of new treatments. Personally I would not go with any option for harsher side effects unless I absolutely had to. And the years go by mighty fast these days....
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Walt. Congratulations! Hope you kicked it good! It sure is a nice surprise! You come back from vacation, go to work, get cured! Super!
Just a little question... When you say relapse after 62 weeks, was it 62 weeks after End Of Treatment?? or right after you stopped treatment? I remember my shit times on Inf and I am curious...
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I have had my blood test 5 wks. after treatment and virus was undetected. In 8 wks. I will have my last hoping for virus to be undetected and cured. Opaleye sorry you were not cured but there is some good news. I had my treatment through the VA and was cared for during treatment by a pharmaceutical doctor. I was told by her they are working on a one pill treatment one pill and hopefully cured. I think that better and more successful treatments will be soon available. Think positive and do your best to care for your liver until a better treatment becomes available.It took me 14 wks. to become undetected and took harvoni for a total of 21 wks. I was suppose to take it for 24 wks. but my eyes became swollen, sore and very blurry. So treatment was stopped because of concern for my eyesight and a eye exam was scheduled. Now I am very tired in ways than I was not before treatment. The medicine seems to of affected everyone differently.
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Walt. Congratulations! Hope you kicked it good! It sure is a nice surprise! You come back from vacation, go to work, get cured! Super!
Just a little question... When you say relapse after 62 weeks, was it 62 weeks after End Of Treatment?? or right after you stopped treatment? I remember my shit times on Inf and I am curious...
Mario for me it was the same back at the end of 2004, it was not until long after the 48 week treatment that I was finally confirmed as having relapsed so the months of hope very quickly turned to despair in my case and I am sure Walt went through the same hell as I did after being so close to a cure back then. It was torture to say the least not having more frequent VL testing because of the high costs of tests!
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Opaleye, So sorry. Please don't be offended but I was somewhat relieved that it wasn't really a relapse but a failure to clear the virus. Some failure of the drug to work with your body chemistry perhaps. Each relapse unnerves me, as I could be next. I can't follow your footsteps as I am not detected. Hoping to stay that way.
I was surprised to read the suggestion that <15 detected was considered negative, all my results say <15, then not detected. Don't know what to make of any of it but agree with Mario, a low level of fibrosis can allow you to buy time for the next round of new treatments. Personally I would not go with any option for harsher side effects unless I absolutely had to. And the years go by mighty fast these days....
I'm not offended at all. I just called it "relapsed" because that's what the nurse called it. While I was on Harvoni and got the < 15 Detected results, I did some research and according to these studies, most people did clear the virus even if a few were detected at EOT. So, when my doctor said he considered that "negative" I figured he was reading the same studies.
Thanks so much for the encouragement, and congrats on being undetected! :D
~opaleye
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I am CURED!!!!!! The most amazing feeling in the world. After the previous failure of over a year interferon and the 12 week harvoni....Speechless... :) :) :)
So wonderful to hear these success stories!! :D
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I have had my blood test 5 wks. after treatment and virus was undetected. ... I was told by her they are working on a one pill treatment one pill and hopefully cured. I think that better and more successful treatments will be soon available.
Congrats on being undetected!! Thanks so much for the encouragement and the news about this "one magic pill." :D
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1. 4 wk EOT VL: not tested
2. 15 wk EOT VL: ~ 170,000
3. Treatment duration-8 weeks
4. tx naive
5. Genotype 1a
6. fibrosis status--FibroSure F1-2 A2 (Oct 2014)
7. Initial VL 2,812,380 (Oct 2014)
Correction (sorry for the typo): 2. 15 wk EOT VL: ~ 670,000
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Mario sorry. I was referring to interferon/ribr treatment on 07'. The virus came back after completing 48 week treatment. so effectively 14 weeks after treatment ended! Couldn't sleep last night, was crying which were tears of happiness. After this long difficult journey its gone. I felt sad, glad emotions were racing through my head. But I didn't mind not sleeping and just gong through these emotions!. Best success to everyone and this group has been tremendous support and guidance helping me with this fear of taking Harvoni and if I would be cured. It works if you work it!!!!!!!!!!! :)
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Walt. You answered the question perfectly. I just can't imagine the despair to see that f...ing virus coming back 16 weeks later! During my Inf treatment, the virus was back right after. I didn't get a chance to be happy, just more bad news after an awful treatment!
As for your happiness right now, you're doing better than me! Even after being UND 12, I still don't trust my results. Did they do the test properly? Will it come back? Why don't I have more energy? How long will my side effects after treatment last?
I am an accountant so I have a professional bias. Everybody lied to me during tax season. So, I need a lot of proof before declaring myself satisfied! I guess this bias is showing all over my life!
In any case, I'm happy for you and wish you the best of luck for the future!
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Mario, Trust yourself and your doctors. You deserve to be hep C free! Stay present. Today you are Hep C free! Enjoy the happiness and today! I too had some distrust. I let it go and believe what they said. I deserve to be HepC free and I am. Best of luck and love yourself today....:)
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Mario, Trust yourself and your doctors. You deserve to be hep C free! Stay present. Today you are Hep C free! Enjoy the happiness and today! I too had some distrust. I let it go and believe what they said. I deserve to be HepC free and I am. Best of luck and love yourself today....:)
Great attitude and great advice, Walt!
kim
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Hi guys
I haven't logged into the forum in several weeks, sorry but I got my 24wk post lab results.
Not detected!!
I'll have to do some catching up on the posts.
1. 4wk - 12 wk after EOT VL status UND!
2. Treatment duration: 12wks
3. tx naive or experienced: Experienced
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status (date): not done
6. Initial VL (date): Pre Tx 3.7m, dx early 90's
12wk post TX lab UND!
24wk post TX lab UND!
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Great news, Bob! While you were away from the forum, Mugwump/Eric started a separate thread called "Harvoni 24 week EOT results check." I hope you will post there (http://forums.hepmag.com/index.php?topic=3205.0) as well.
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gnatcatcher
Thanks I'll check in over there too :)
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Mugwump....Thanks for your empathy. I know you. You experienced the same disappointment when relapsing years ago. It was Hell. I thought I was going to die from the meds but persevered because I wanted the cure. So akll that makes this so much sweeter and I am grateful I had another opportunity and it worked. Thanks all.
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Got my SVR12 notice today 8)
Thus ends a 43 year problem, brought on by a blood transfusion at 8 years old.
If someone is still collecting stats, here's mine:
1. 12 wks after EOT VL status: UND (SVR12)
2. Treatment duration: 3 months (was initially scheduled for 2)
3. tx naive or experienced: naive
4. Genotype (1a or 1b): 1a
5. F1-F4 fibrosis status (date): F1
6. Initial VL (date): 2.9 million right before started Harvoni
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Yay, Apache! So happy for you!
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Walt. You answered the question perfectly. I just can't imagine the despair to see that f...ing virus coming back 16 weeks later! During my Inf treatment, the virus was back right after. I didn't get a chance to be happy, just more bad news after an awful treatment!
As for your happiness right now, you're doing better than me! Even after being UND 12, I still don't trust my results. Did they do the test properly? Will it come back? Why don't I have more energy? How long will my side effects after treatment last?
I am an accountant so I have a professional bias. Everybody lied to me during tax season. So, I need a lot of proof before declaring myself satisfied! I guess this bias is showing all over my life!
In any case, I'm happy for you and wish you the best of luck for the future!
So you know Mario, for every debit, there must be a credit! Give yourself credit, and believe you are cured. Hugs, brother!
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Colorado girl. Well answered and real cute!
I just saw your statistics at the bottom of your post. You're a newbie to this new hep c free life! You seem to be in very good spirits soon after your good news. Nice to see!
It's been 3 - 4 days where I have felt recurring side effects and my tinnitus hampers my life (restaurants, noisy places, etc). I think I overdosed myself with 24 weeks of treatment.
Anyway, I guess I prefer to deal with this than the hep c virus! Good luck to you and thanks again for the uplifting comment!
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Just read the posts from the last few weeks, congrats to all that reached SVR.
Some bummer posts too :(
opaleye
So sorry, gotta suck for you but you seem to have a good attitude....better then I would. Good luck and the stock marked kinda recovered.
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Just got my results this morning and want to join in. I am new to this or any forum. May have contacted this virus in 1967 when I received blood during an operation at age 15.
My stats:
1) 12 weeks on Harvoni + Ribavirin Finished June 2
2) Treatment experienced, 3 times non-responder, 2005, 2008, 2011
3) Genotype 1A
4) FibroScan F2 3-2015, Fibrospect F2-F4 6-2014
5) HCV Load 7,686,524 on 3-2015
6) 4 week and 12 week after treatment Undetected :)
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Congratulations on being cured, PintoLady! And welcome to the forums.
And congrats to all others who have posted their good news here!
Wellness to all,
kim
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Got my 12 Week Post EOT result today. I thought it would be more of a climatic moment. :o HCV RNA Not detected. I guess not everything can be associated with sex! :-\
1. 12 week EOT status – SVR12
2. Treatment Duration - 12 weeks Harvoni
3. tx naive or experienced - experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL – 12043488 mil
AST/SGOT <35 IU/L 19
ALT/SGPT <78 IU/L 19
PROTEIN TOTAL 6.0 - 8.3 g/dL 7.7
Albumin 3.7 - 4.8 g/dL 3.4
Bilirubin, Total <1.2 mg/dL 0.3
Bilirubin, Direct 0 - 0.3 mg/dL 0.1
Alkaline Phosphatase <130 IU/L 75
Globulin 2.5 - 4.1 g/dL 4.3
AFP, Non-Maternal <8.1 ng/mL 3.7
HCV results (IU) HCV RNA Not detected.
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Congrats to PintoLady and CLCll, enjoy the feeling :)
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Got my 12 Week Post EOT result today. I thought it would be more of a climatic moment. :o HCV RNA Not detected.
Woo Hoo!! :D
Congrats to you and PintoLady! :D :D :D
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Hey everyone. Just got my 24 post treatment week ALL CLEAR RESULTS! YAY...the nurse called me with the results and I am still Undetected. I was confident that it was OK but it is always good to hear. I will get the copy this coming Wednesday along with related blood work.
I just keep singing
GOOD BYE BIO HAZARD~HELLO LIFE!
I figured it is good to share and build up everyone's confidence that Harvoni truly ROCKS and for you to move forward. May all of you warriors keep up the fight and WIN the battle!
Bless you all!
Katie
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Congratulations Kate!!!
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Congrats to all who are undetected. Such great news.
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Fabulous, Katie! I hope you'll also post the great news to the newish thread Mugwump/Eric started called "Harvoni 24 week EOT results check": http://forums.hepmag.com/index.php?topic=3205.0 You'll make it SEVEN out of SEVEN who have achieved SVR24!
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Fantastic News, Katie! I knew you would do it!!!
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Got the call yesterday nurse said that I am CURED twelve weeks after treatment!
was 1b
12 wks harvoni
2 prior failed treatment
f0 f1
I have been truly blessed. I feel great lots of energy. I am ready to start my new life.
So happy for all that have cleared, and hopeful for new treatments for those who have not. The cure ended up costing me only $5.00, life is good!
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tm, I'm so glad "the third time's the charm" is true for you. Have a wonderful new life.
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Great news, Katie! And tm, I love how you posted "was 1 b"! I took my final Harvoni 2 hours ago and I'm am hoping I WAS 1b also!
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Thanks again for all of the good wishes. You guys are terrific and you helped me through this so much.
It's been great to get to know so many of you on this forum and I'll still be around offering any support or input that I can!
Big {{{{HUGS}}}} to all of you!
Katie
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Fantastic news Katie and TM :) :D 8)
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Congrats to you both Katie and TM!
:)
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My 20 year old daughter who was infected by her birthmother at birth will start her 12 week treatment tomorrow. I'm hoping for SVR.
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Concerned father
Wishing your daughter the best of luck with her treatment.
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Concerned father
Wishing your daughter the best of luck with her treatment.
Thanks
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1. 12 wk AFTER EOT VL status 1.5 million (was Undie at EOT, It came back after that, before the final test.)
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1A
5. F1-F4 fibrosis status (date) - F-4 Feb '11
6. Initial VL (date) 2.7 mil, Dec '14
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Katmakia. I am totally sorry for your relapse. You seem to take the news real well and with the new medication coming out, I know you will find something that will rid you of this terrible disease!
I went into your old posts and you are the first case that I know about who relapsed between week 4 and week 12. I thought once you cleared week 4 undetected, that it was over. I stand corrected!
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Katmakia, Sorry to hear that. Did you change your tooth brush and razors on regular basis during the treatment?
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mario, I was undetected at end of the 12 week treatment. I relapsed after that, some time before the 12 week after end of treatment labs. Which would be 24 weeks from start of treatment.
Katmakia. I am totally sorry for your relapse. You seem to take the news real well and with the new medication coming out, I know you will find something that will rid you of this terrible disease!
I went into your old posts and you are the first case that I know about who relapsed between week 4 and week 12. I thought once you cleared week 4 undetected, that it was over. I stand corrected!
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Oh, absolutely, dad. 8) I changed my toothbrush every 2 weeks. Didn't use any razors. Also tossed any needles I used to dig out splinters. Have not put any pierced earrings on. Tossed tweezers, nail clippers and scissors as well, that may have come into contact with blood.
Katmakia, Sorry to hear that. Did you change your tooth brush and razors on regular basis during the treatment?
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katmakish
Sorry about the relapse, sounds like you did everything correct. I really don't know what else to say but I hope the newer drugs coming out work for you.
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katmakish: When one of our group has a relapse, we all feel your pain. So sorry but stay strong and move forward. There is lots of research and new things right around the corner so continue taking care of yourself and stay informed. You will win this battle.
I send you a {{{{BIG HUG}}}}
Katie
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Katmakia, Sorry to hear that. Did you change your tooth brush and razors on regular basis during the treatment?
I really think the best solution to the tooth brush question is not to worry about it. I changed out after I got my first <15 vl reading. But as the TX progressed I simply went to 4 brushes that I allowed to dry out in rotation. And I used food grade hydrogen peroxide solution on them after use. So there is no way that they could have been a problem.
Over the years I am also sure that the worries about towels and all the other precautions that us HCV victims have fretted about are much overblown. If transmission by these means was common then HCV would be a pandemic of monumental proportions. I am not trying to lighten the seriousness of the disease in any way. But there is far too much concern over this aspect of living with the disease.
For all the years that I did not know that I had the infection I did not infect the people who used the same towels, shared razors at times, showered together and had contact that is natural and human.
Yes be concerned during treatment about reinfect but the chances of this happening are very, very slight if there are no other mitigating circumstances like ongoing drug use with infected partner(s) or other self destructive behaviour to consider.
I am sure your daughter will clear this disease and be free from the life of worry that every little cut, use of a towel, trip to a dentist or medical procedure brings.
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@katmakia Going forward after finding out the news is difficult. This trial holds some hope because the agent in combination with solvoldi seems to be more effective than ledipasvir.
https://clinicaltrials.gov/ct2/show/NCT02378935?term=Gilead+%26+Hepatitis+C&recr=Open&no_unk=Y&rank=3 (https://clinicaltrials.gov/ct2/show/NCT02378935?term=Gilead+%26+Hepatitis+C&recr=Open&no_unk=Y&rank=3)
I know I would see about enrolling if my treatment failed. Part of the study is for failed TX with cirrhosis so the study is for all circumstances and does not leave out any levels the way some studies do.
All the best
Eric
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I really think the best solution to the tooth brush question is not to worry about it. I changed out after I got my first <15 vl reading. But as the TX progressed I simply went to 4 brushes that I allowed to dry out in rotation. And I used food grade hydrogen peroxide solution on them after use. So there is no way that they could have been a problem.
Over the years I am also sure that the worries about towels and all the other precautions that us HCV victims have fretted about are much overblown. If transmission by these means was common then HCV would be a pandemic of monumental proportions. I am not trying to lighten the seriousness of the disease in any way. But there is far too much concern over this aspect of living with the disease.
For all the years that I did not know that I had the infection I did not infect the people who used the same towels, shared razors at times, showered together and had contact that is natural and human.
Yes be concerned during treatment about reinfect but the chances of this happening are very, very slight if there are no other mitigating circumstances like ongoing drug use with infected partner(s) or other self destructive behaviour to consider.
I am sure your daughter will clear this disease and be free from the life of worry that every little cut, use of a towel, trip to a dentist or medical procedure brings.
Excellent post.
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Katmakia, Sorry to hear that. Did you change your tooth brush and razors on regular basis during the treatment?
Just to chime in I only changed my tooth brush at the interval recommended by my dentist at 3-4 months of use so I did change my brush once on treatment. I also don't shave but still have the same fingernail clippers I started treatment with.
As Mugwump said "the chances of this happening are very, very slight"
Good luck to your daughter on treatment I also am sure she will be fine,
Lynn
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1. 12 wk AFTER EOT VL status 1.5 million (was Undie at EOT, It came back after that, before the final test.)
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1A
5. F1-F4 fibrosis status (date) - F-4 Feb '11
6. Initial VL (date) 2.7 mil, Dec '14
Hi Katmakiah
Also so sorry to hear of your relapse. When I relapsed last year after treating with Sovaldi and Olysio being not detected on treatment and being found to have relapsed at 12 weeks post test I was crushed. My heart goes out to you and wishing you the best.
Is retreating with 24 weeks of Harvoni with Ribavirin being considered for you?
Hugs to you
Lynn
please see the latest AASLD HCV Guidance:
Recommendations for Testing, Managing, and Treating Hepatitis C
RETREATMENT OF PERSONS IN WHOM PRIOR THERAPY HAS FAILED
http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed
About half way down the page the report states in the highlighted new text revised Aug 7th:
"Recommended regimen for patients in whom previous treatment with any HCV nonstructural protein 5A (NS5A) inhibitors has failed (including daclatasvir plus sofosbuvir, ledipasvir/sofosbuvir, or paritaprevir/ritonavir/ombitasvir plus dasabuvir)."
"For patients with minimal liver disease, deferral of treatment is recommended, pending availability of data."
"Rating: Class IIb, Level C"
"For patients with cirrhosis or other patients who require retreatment urgently, testing for resistance-associated variants that confer decreased susceptibility to NS3 protease inhibitors and to NS5A inhibitors is recommended. The specific drugs used in the retreatment regimen should be tailored to the results of this testing as described below. Treatment duration of 24 weeks is recommended and, unless contraindicated, weight-based RBV should be added."
"Rating: Class IIb, Level C"
"For patients with cirrhosis or other patients who require retreatment urgently, testing for RAVs that confer decreased susceptibility to NS3 protease inhibitors (eg, Q80K) and to NS5A inhibitors should be performed using commercially available assays prior to selecting the next HCV treatment regimen. For patients with no NS5A inhibitor RAVs detected, retreatment with ledipasvir/sofosbuvir and RBV for 24 weeks is recommended. For patients who have NS5A inhibitor RAVs detected and who do not have NS3 inhibitor RAVs detected, treatment with simeprevir, sofosbuvir, and RBV for 24 weeks is recommended. For patients who have both NS3 and NS5A inhibitor RAVs detected, retreatment should be conducted in a clinical trial setting, as an appropriate treatment regimen cannot be recommended at this time."
"No data are yet available on the retreatment of patients for whom prior treatment with PrOD has failed. However, studies that have evaluated patients whose virus did not respond to PrOD have reported the presence of RAVs that confer decreased susceptibly to NS3 protease inhibitors (eg, paritaprevir), NS5A inhibitors (eg, daclatasvir, ledipasvir, ombitasvir), and nonnucleoside polymerase inhibitors (eg, dasabuvir). Based on these observations, patients for whom treatment with PrOD did not result in an SVR should have HCV treatment deferred in the setting of mild liver disease, and for those with advanced fibrosis, testing for RAVs should be performed."
"Data on the retreatment of patients for whom prior treatment with ledipasvir/sofosbuvir has failed are very limited. In a pilot study, 41 patients with and without cirrhosis who did not achieve an SVR with 8 weeks or 12 weeks of ledipasvir/sofosbuvir were retreated with 24 weeks of ledipasvir/sofosbuvir. SVR12 rates varied according to the presence or absence of NS5A inhibitor RAVs. Among 11 patients for whom NS5A inhibitor RAVs were not detected, SVR occurred in 11 of 11 (100%); in contrast, among 30 patients for whom NS5A inhibitor RAVs were detected, SVR occurred in 18 of 30 (60%). Importantly, NS5B inhibitor RAVs (eg, S282T) known to confer decreased activity of sofosbuvir were observed in 3 of 12 (25%) patients for whom the retreatment regimen was not successful. Similarly, in the OPTIMIST-2 study in which patients with cirrhosis were treated with simeprevir and sofosbuvir, the presence of NS3 RAVs, namely the Q80K polymorphism, led to a decreased SVR rate in patients with HCV genotype 1a infection. SVR occurred in 25 of 34 (74%) patients with HCV genotype 1a and the Q80K RAV and in 35 of 38 (92%) patients with HCV genotype 1a without the Q80K RAV. Based on these data, retreatment for patients for whom an NS5A inhibitor-containing regimen has failed should be considered in the context of retreatment urgency and the presence or absence of RAVs to inhibitors of NS3 and NS5A. Further, based on limited data, RBV is recommended as part of all retreatment regimens for patients in whom prior treatment with NS5A inhibitors has failed. Although no data exist, consideration may also be given to the addition of PEG-IFN to the retreatment regimen in patients who are eligible for this agent; PEG-IFN will have antiviral activity regardless of the RAVs present."
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I really think the best solution to the tooth brush question is not to worry about it. I changed out after I got my first <15 vl reading. But as the TX progressed I simply went to 4 brushes that I allowed to dry out in rotation. And I used food grade hydrogen peroxide solution on them after use. So there is no way that they could have been a problem.
Over the years I am also sure that the worries about towels and all the other precautions that us HCV victims have fretted about are much overblown. If transmission by these means was common then HCV would be a pandemic of monumental proportions. I am not trying to lighten the seriousness of the disease in any way. But there is far too much concern over this aspect of living with the disease.
For all the years that I did not know that I had the infection I did not infect the people who used the same towels, shared razors at times, showered together and had contact that is natural and human.
Yes be concerned during treatment about reinfect but the chances of this happening are very, very slight if there are no other mitigating circumstances like ongoing drug use with infected partner(s) or other self destructive behaviour to consider.
I am sure your daughter will clear this disease and be free from the life of worry that every little cut, use of a towel, trip to a dentist or medical procedure brings.
Thank you Mug.
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Hi all. So great to see so many victories here! My heart goes out to those who did not achieve SVR12. There will be future chances!
I know this thread was started for Geno 1 people on Harvoni. And I am/was Geno 3a on Harvoni+Riba. But I wanted to share my results here too. There are a number of Geno 3 people (and probably other Geno's as well) on Harvoni. Right now in Canada a clinical trial involving 100 Geno 3's is underway involving Harvoni+Riba. I am not the only forum member participating in that trial. So since I just achieved SVR4, here are my deets:
1. 4 weeks post-treatment (Aug-25-2015): HCV Undetected
2. 12 weeks (Harvoni+ribavirin)
3. tx naive
4. Genotype 3a
5. Fibroscan: F2 (8.5 kPa) (Apr-16-2015)
6. Initial VL: 4 million (May-5-2015; day 1 of tx)
kim
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Kimoutoftheforest. Congrats for your 4 weeks results! I changed your name accordingly!
Best of wishes for the future!
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Kimoutoftheforest. Congrats for your 4 weeks results! I changed your name accordingly!
Best of wishes for the future!
Thank you Mario! :)
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I did post my results in July, undetected one month after stopping harvoni after 8 weeks. Still have unopened bottle, doc can't take it. I can't take it due to HTN side effect and anxiety. Almost 2 months post, feel ok, lil tired, weight didn't go yet, 5 lb gain. Wish someone could use it.
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Yay, Kim in the Forest! Congratulations on your SVR4!!!!!!
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Espo - do you have a free clinic where you live? They will often take unopened, unexpired prescription meds. Make sure you remove any personal info from the label if you find one that will take it! Good luck with everything. Fingers crossed that 8 weeks did the trick for you! I'll put my 20 lbs with your 5 and we can send them to Kim.
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Hello Everyone,
Congrats to all of you have reported such great news! It was so sad to read about the few others who didn't have such great results & now have other issues to deal with. Having gone through 12 weeks of tx being "detected" (until week 12 EOT), I know the anxiety & disappointment that accompanies this tx. So, I would just say to any of you still on tx, don't give up hope. Harvoni has WORKED for many of us !!!
I haven't been on here in quite a while, but just wanted to report my great news! :) ;) :D 8). I finished Harvoni tx on 6-5-15. Just returned from a nice long bucket list trip to France. I figured I should treat myself to a great vacation no matter what the outcome of the test! SO, here it is!
1. 4 week EOT-UNDETECTED; 12 WEEK EOT-UNDETECTED!!!!!
2. TX Duration=12 weeks
3. TX experienced
4. Genotype 1A
5. F2
6. VL=316,000 3/2015
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Hi everybody,
Well I just got back my SVR 12 results. I am a viral relapser. 378195 which is worse than it was before I started treatment.
During my 8-week Harvoni (no Riba) treatment I had normal ALT and AST throughout and virus was always detected but under the threshold of 24. I was not able to convince my doctor to extend my treatment to 12 weeks. I am F3/F4 liver (11.4 kPa), diagnosed around 1990. Infected at birth in 1974 by transfusion. I am genotype 1a. My AST is 45 my ALT is 99 now. Keeping chin up for new medicines. Not sure if Havoni 24 weeks is worth trying at this point or instead waiting for one of the next 8-week or 12-week new combos coming out soon.
HopefulCamper
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Hi Hopeful Camper,
I'm sorry to here about the relapse. I know this a real bummer.
There are new treatments coming to market and you'll certainly get this virus.
Keep your head up. We're all standing with you!
Best wishes, Mike
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My heart goes out to you, Hopeful Camper. I know there is going to be a shake-up to these treatments that will get us all there soon.
Hugs!
Colorado Girl
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Sorry HopefulCamper that the harvoni did not work for you. It took me 14 weeks to become undetected, for about 6 weeks I stayed at 15 detected viruses. I was tested 5 weeks after 21 weeks of harvoni and still undetected. I think if you could of taken the harvoni for a longer time it may have worked.Hopefully you will have the opportunity to take it again for a longer time and if not I think that soon there will be better treatments. I hope I don't relapse and I am trying to think positive that I will not. I am anxiously waiting for my 12 week lab results.
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Camper. I was like you, UND after 4 weeks and awaiting my 12 weeks results. During that time, I researched if anyone was UND 4 and a relapse at 12 weeks. I couldn't find anyone... So, you're most likely cured!
As for the ones who relapsed, it might be a good idea to have the special testing done to determine what kind of variant or resistance you might have before embarking on another treatment.
Good luck to everyone!
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Thank you, Mario That helps me to feel better in that I will most likely be cured. My doctor told me technically you are cured, I am understanding it better now. Almost feel like celebrating its slowly becoming something real and not a dream anymore.
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Got my 12w result. So relieved. Next and final test at 24w mid November.
1. post EOT: SVR6, SVR12
2. Harvoni 12 weeks
3. Tx experienced
4. 1a
5. F3
6. 1.8 M
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Congrats Bixter! You are now ready to rock!
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Congratulations Bixter. :D
I know you feel relieved knowing your virus is gone. I have no doubt the 24 week test will come out the same as the 12 week test. Negative ;) Judging by the posts and everything else I've read, I think everyone who passes the 12 week test goe's on to be Undetected at the 24 week Test. Again, Congratulations!!!
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Thank you guys and congratulations to you too. I know you both had some good results recently.
It was an amazing feeling to wake up the next day knowing I probably didn't have hep c anymore. Now I am not a very optimistic person but even I have to believe that it is very unlikely to relapse after the 12 w test.
If they only could come up with a 100% cure for each and every one of us in the near future, they seem so close.
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Thought it could be time to update the stats again, it's now more than a month since the last time. The percentage is more or less the same since we now have so many results.
8 week tx: 20/28, SVR 71,4%
12 week tx: 70/79, SVR 88,6
24 week tx: 7/7, SVR 100%
I think there is 31 more results reported since last time.
If you want I can post the whole list again but it is by now a very long list.
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Thanks Bixter! I think we are now interested at overall results rather than one by one! Don't use your time for description. I think the work you have done is excellent for decision purposes.
What I get out of it:
For the people having a 8 weeks treatment. Are you sure you want to stick with 8 weeks? 75% chances for a cure? Length was decided by an insurance office worker? If yes, buy yourself an extra bottle and obtain an increase of 15 % in cure rates! I am totally against the 8 weeks treatments except for the least affected patients. The problem is that if you fail, the retreatment is heavy in side effects (24 weeks) or non-available right now! Gilead said that 8 weeks "could" be considered. Insurance companies took that sentence and applied it widely. Now, we are starting to have the results of that decision.
It's your life! Don't let someone else gamble the lowest price for your cure!
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mario555
I agree!!!
I'm with you on the 8 week treatment. I think the treatment should be a minimum of 12 weeks for everyone, regardless of their VL. I also agree about the insurance companies taking that to a level that benefits them, money wise. It would be nice if Gilead would revise their 8 week policy to a standard 12 week minimum. Hopefully, the insurance companies would hop on board. But knowing how they act, they would probably just deny it outright. As Health Alliance Plan of Michigan did mine; twice. >:(
The stats on this board are only showing a 70% cure rate for 8 weekers. It seems, if they had been able to do an aditional 4 more weeks, the stats would look a little different in their favor. But that's my opinion. I'm also with you on whowever gets approved, by the insurance, for 8 weeks of treatment, should try and find a way to get an additional 4 weeks of pills. That's easier said than done though. I know that some people, who are taken off the meds early, are trying to donate unused prescriptions and 8 week patients might want to take them up on the offers, when possible.
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Bixter
I think you're doing a Great Job with the stats. I Appreciate the work you're doing on them. :)
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Thought it could be time to update the stats again, it's now more than a month since the last time. The percentage is more or less the same since we now have so many results.
8 week tx: 20/28, SVR 71,4%
12 week tx: 70/79, SVR 88,6
24 week tx: 7/7, SVR 100%
Congrats on your SVR12 Bixter! And thanks very much for taking the time to compile and crunch the numbers for us. It's really useful to see some "real world" cure rates on 8, 12 and 24 weeks of Harvoni, respectively. As others have said, it is certainly looking like it would be wise to discontinue the 8-week treatment duration and give no one less than 12 weeks. 71% cure rate is unacceptable with these new drugs, which have the ability to do so much better than that.
best,
kim
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Bixter, many thanks for tallying all results to date and calculating the percentages. For comparison purposes, here are Gilead's clinical trial results rearranged to accord with the arrangement of Bixter's data. Gilead rounded to whole percentages; its non-SVR numbers include not only relapsers but also those lost to follow-up.
Bixter's data:
8 week tx: 20/28, SVR 71,4%
12 week tx: 70/79, SVR 88,6
24 week tx: 7/7, SVR 100%
Gilead's data:
Treatment-Naive Non-Cirrhotic:
8 weeks tx: GT1a 159/171, SVR 93% GT1b 42/43, SVR 98% BOTH* 202/215, SVR 94%
12 weeks tx: GT1a 165/172, SVR 96% GT1b 43/44, SVR 98% BOTH 208/216, SVR 96%
*includes someone without a confirmed subtype
Treatment-Naive Non-Cirrhotic GT1 by Baseline Viral Load:
8 weeks tx: <6 million 121/123, SVR 98% ≥6 million 83/92, SVR 90%
12 weeks tx: <6 million 129/131, SVR 98% ≥6 million 84/85, SVR 99%
Treatment-Naive GT1:
12 weeks tx: GT1a 142/145, SVR 98% GT1b 67/67, SVR 100%
12 weeks tx: non-cirrhotic 176/177, SVR 99% cirrhotic 32/34, SVR 94%
(excludes those with missing cirrhosis status)
Treatment-Experienced with or without Cirrhosis:
12 weeks tx: GT1a 82/86, SVR 95% GT1b 20/23, SVR 87% BOTH 102/109, SVR 94%
24 weeks tx: GT1a 84/85, SVR 99% GT1b 24/24, SVR 100% BOTH 108/109, SVR 99%
Treatment-Experienced GT1: (excludes those with missing cirrhosis status)
12 weeks tx: non-cirrhotic 82/86, SVR 95% cirrhotic 19/22, SVR 86%
24 weeks tx: non-cirrhotic 86/86, SVR 100% cirrhotic 22/22, SVR 100%
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I did the 8 week treatment. It ended April 3. After 5 months not knowing, I got my blood tests results. I'm still UND and my gastro considers me cured!
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I did the 8 week treatment. It ended April 3. After 5 months not knowing, I got my blood tests results. I'm still UND and my gastro considers me cured!
That is great Ruthie that means that you are SVR 24. It is really good to see someone who did the 8 week tx reach this milestone. I am surprised that they did not do a 12 week VL test though! I would not have been able to take the waiting and would have torn a royal strip off the doctors for keeping me in the dark for 6 months. ;)
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Ruthie, That is most excellent and Happy news. I'm 9 1/2 weeks into 12 week TX. Plodding along and get great encouragement from Your post. Best Wishes to You & Your SVR results. Hope all is well on post treatment for You. I should get My Lab results ( 8 week ) on 09-17 providing the Lab doesn't screw up again! LOL. Your SVR chalks up another one for the Good Guys!!! Keep the Faith everyone, Happy Dance is on Ruthie!
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Ruthie!!! A huge congrats to a fellow 8 weeker!!! I remember we started treatment a few days apart from each other!!! What a relief on the svr!!! Enjoy being hep free! My test is on sept 22 I was undetected at 12 weeks post so I hope it all stayed the same!!!
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4 weeks post Harvoni treatment - UNDETECTED!
12 weeks of treatment, VL: 5.9M
treatment experienced (tel/rib/peg int)
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CONGRATULATIONS to all of you fellow UNDETECTED folks!!!! Celebrate and do something nice for yourself!!!!
I understand the stress of waiting and glad your journey is over or almost there with positive results so far. Harvoni is definitely a miracle drug and I know something great is around the corner for those who, for whatever reason, didn't make it this round. They have figured out how to defeat this parasite and will figure out the specifics for all of you. Keep the faith and keep informed and we'll be here to give you support.
Katie
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That is great Ruthie that means that you are SVR 24. It is really good to see someone who did the 8 week tx reach this milestone. I am surprised that they did not do a 12 week VL test though! I would not have been able to take the waiting and would have torn a royal strip off the doctors for keeping me in the dark for 6 months. ;)
My Dr wanted it done at 12, but there was a snaffoo with his staff. Better late than never!
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Ruthie!!! A huge congrats to a fellow 8 weeker!!! I remember we started treatment a few days apart from each other!!! What a relief on the svr!!! Enjoy being hep free! My test is on sept 22 I was undetected at 12 weeks post so I hope it all stayed the same!!!
I hope and pray you're svr, too!
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I got my 12 week post treatment results this morning and I am UNDETECTED! I only had to do 8 weeks of Harvoni with fairly minimal side effects and I feel better and healthier than I have in years. I got hugs from my Doctor and HepC Nurse when they delivered the news. After almost 45 years of having this virus( although I only found out 15 years ago) I am so grateful for this new start.
:D
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janelise49, Ruthie & Gramsgrl
Congratulationms to all three of you on achieving SVR. ;)
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I see there is some relatively new people posting their results in the stats thread which I think is great.
As a favor to the stats keeper, Bixter, can people reporting their blood test results use the format that CHepCFree suggested? It makes it easier for Bix to go through the thread and find and post the results. Thanks
Example:
1. 4wk - 12 wk EOT VL status - Undetected/Detected
2. Treatment duration - ? weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) xxxxxxxx
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1. 4wk EOT VL: Undetectected
2. 8wk EOT VL: Undetectected
3. 12wk EOT VL: Undetectected!!!
3. Treatment duration-12 weeks
4. tx naive
5. Genotype 1a
6. fibrosis status--F3-F4 (Mar 2015)
7. Initial VL (2.1million/Oct 2014; retest 700,000/March 2015)
8. AST (SGOT); 22. ALT (SGPT); 20. First time these numbers have been in the normal range in over 30 years.
Made it to the 12 week EOT mark. I'll check back in December. Meanwhile, good luck to everyone here. All my best.
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Congrats to you MDJ!!!!
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Congrats to you too Gramsgrl
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Nice to see so many new SVR reports. I agree with GLCII that it’s important that we try to follow the 6 paragraphs that the original poster suggested in the beginning of this very long thread. Also for paragraph 1 maybe we can clarify that it is post EOT results.
1. 4 wk/12 wk post EOT VL status - Undetected/Detected
2. Treatment duration - ? weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) xxxxxxxx
I tried to have a look at the SVR/Relapse rate compared to fibrosis status but it didn’t seem very meaningful since at least one third of the reports were incomplete and lacked info on fibrosis status.
Also if someone had riba added to TX, add that info under paragraph 2. I don’t think many people did, I can only find four 12 weakers w riba and one 24 wk TX, all SVR, but so are so many others.
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Hi everyone,
Long-time lurker first-time poster here.
1. 12 wk post EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - Naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (Jan. 2015): Under six million.
I initially had a slightly enlarged spleen (which is how I found out I had Hep C), but now in the ultrasound everything is normal (including the liver). I heard that an enlarged spleen means cirrhosis which is why I freaked out at first. I did test positive for ANA (autoimmune) still, so even though that could have been the Hep C now it has to be something else (like lupus).
My AST now is 17 and my ALT is 14. Used to be in the upper 40s and 50s in my first blood test. My bilirubin is still high (2.4) but i heard that is a side effect of Harvoni and it dropped since my EOT blood work. More than likely I got infected 30 years ago because my mom had blood transfusions when she was going into labor, and she has Hep C 1b too.
Question for everyone: is cologne or hand sanitizer absorbed and processed by the liver?
I am so happy for all of you who are cured as well. For those who relapsed, know we are with you.
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Bixter - where can we go to see the updated listing?
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Congrats to you ragnarok!!!!!!
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Just got my 3 months eot results. Undetected
GT 4
Treatment naive
16 weeks harvoni including 6 of riba
Moderate fibrosis
VL at start of treatment 84,000
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I'm loving seeing all of these SVR reports! Congrats to you all. It helps me to stay believing I will be cured too.
And, for those not so fortunate on this round, I feel you and I think it's more of a "not yet". I'm trusting your time will come as well. We all deserve it.
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Congrats to you Cure4Life!!!!! Great news!
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Update at 12 weeks after tx:
1. 12 wk EOT VL status -Undetected
2. Treatment duration 12 wks
3. tx naive
4. Genotype (1a)
5. F1-F4 fibrosis status unknown
6. Initial VL 1 million in 2014
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Congratulations, Grateful 52! Nice to see another tx naive GT1a success story. Best wishes for your much healthier new life.
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I AM CURED!
8 wks harvoni treatment, ended in 2/15, undetectable since the very first blood test (4wks). Just got my 6-mo. post treatment results (SVR24) - still undetectable. So it's official - I am cured! I am in a happy daze! ;D
Geno 1
Age 61
Enzymes normal throughout
VL peaked at 800,000
No other treatments
Harvoni 8 wks
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Deborah, that's TERRIFIC -- congratulations! I hope you'll also post your 6-mo. post-Tx results to the thread called "Harvoni 24 week EOT results check": http://forums.hepmag.com/index.php?topic=3205.0
The fact that you've reached SVR24 after only 8 weeks of Harvoni will be especially welcome news to others on the 8-week protocol.
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Congrats to you Grateful 52 and Debra!!! Whooo Hoooeeyyy!!!!
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Loving these UND Results! Congrats to Deborah and Grateful 52!!!
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I just got my 5 week EOT bloodwork back & am SVR.
1) 5 week EOT SVR = undetected
2) 24 weeks Harvoni
3) treatment experienced
-2002 peg intron/riba taken off therapy due to no SVR & anemia
-2014 12 weeks Olysio/Solvadi SVR 4, 8 & 12 weeks, relapsed
4) Genotype 1a
5) Cirhottic - although Dr. says mild. Fibro Score unknown
6) Initial VL 6.69 million
I purposely waited an additional week to have blood drawn. My 12 week work will be the 1st week of November and I will post. All CT's and ultrasound reveal no signs of Hepatcellular Carcinoma but Dr. will continue to screen. I have a consult with Dr. in Jan., 2016 with a CT scan scheduled before.
I have been in an extreme state of anxiety waiting for this test to come in. It's odd because I could feel the virus was no longer active but allowed my mind to run rampant.
For all of those who are either on or about to undergo treatment please have faith. I relapsed last year after 12 weeks of Olysio/Solvadi when my hopes were so high. I had to appeal the Harvoni but won and went through 24 weeks. Know that there are even more custom tailored cocktails in the pipeline for those who are difficult to treat. This disease will be eradicated. Please have hope and fight. May God help all those in need.
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Congratulations Chino!!! Wooooooo hoooooooo 8) 8) 8) 8) 8)
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Congratulations Chino!!! Wooooooo hoooooooo 8) 8) 8) 8) 8)
Thank you. I wish you the best of luck.
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Alright!!! Congrats chino you will make SVR believe it!
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Lynn,
Thank you. It is a strange new journey.
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Good Morning Everyone!!!
Got my 4 week post treatment results this morning - UNDETECTED !!!!!!!! ;D
I had to go to the hospital for labs this morning because they didn't do them all last week. I asked the lab tech if they had the results from my HCV RNA Quant test and he checked for me. When it came up on his computer screen I started jumping up and down, making funny happy noises and then I grabbed him in his chair and hugged him. Scared the poor young man!!! He kept asking me "Is this good, ma'am? Is this good?" and I told him yes and started crying. All this at 6:15 in the morning. Such a wonderful way to start the week..........
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ConGRAtuLAAAAAAAAtions, Redbird! What a vivid scene!
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Good Morning Everyone!!!
Got my 4 week post treatment results this morning - UNDETECTED !!!!!!!! ;D
I had to go to the hospital for labs this morning because they didn't do them all last week. I asked the lab tech if they had the results from my HCV RNA Quant test and he checked for me. When it came up on his computer screen I started jumping up and down, making funny happy noises and then I grabbed him in his chair and hugged him. Scared the poor young man!!! He kept asking me "Is this good, ma'am? Is this good?" and I told him yes and started crying. All this at 6:15 in the morning. Such a wonderful way to start the week..........
WOW!! What a story. Congratulations Robin on achieving SVR4 8) 8) 8) As I am sure you know, something like 99% of SVR4's go on to achieve SVR12. So you are pretty much there!
kim :)
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Congratulations Redbird29, Deborah & chino1969 and everyone else who posted their results recently.
I think it's great that all these new positives reports are coming in. I would like to see the stats, posted here, start coming closer to what Gilead has posted as part of their clinical trials. Especially for those doing 8 week treatments.
I'd also like to say to those who failed the treatment that ALL of US feel the hit when one of us fails. Most of us have been there and know the feeling all to well. I also think that 2016/17 is going to be the years of the permanant cure with all the progress they'tre making with these new medicines that are in or coming down the pipe. Just hang in there, your time is coming and I think it's close.
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Yes, Congrats to Chino & Deborah on being CURED!!! Sorry I missed you guys earlier. I just noticed Robin/Redbird's posting of her SVR4. It is so uplifting to hear all these victories! :)
kim
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Today I got the good news and I thank God!
12 weeks post Harvoni treatment Undetected. :D
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FANTASTIC Debham!!!
So happy for you! And so encouraged to see folks winning this fight!
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WHOOOO HOOOEEEYYYY!!!! Congrats Chino, Deborah and Debham!!!!!
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I LOVE, LOVE,LOVE, LOVE,LOVE, LOVE,LOVE, LOVE, all of these good results. Congratulations to each and everyone of you! Celebrate your cure and take good care of yourself! :-*
Katie
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All of these great results posted here have given Me an extra kick in the pants to get through the sides I have been going through. Always great to see the fantastic news for a quick pick me up! Heres to all Your grand victories and positive attitudes.
ONWARD AND FORWARD ALL, HOPING FOR MANY FUTURE VICTORIES!
The secret of change is to focus all of Your energy not on fighting the old, but on building the new!
Socrates
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Today I got the good news and I thank God!
12 weeks post Harvoni treatment Undetected. :D
Congrats Debham! Seems we are having a right royal crop of cured folks blossoming right now. Way to go, people! 8)
kim
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Hi all,
I have received mother's results.
10 weeks after treatment, Hepatitis C is NEGATIVE. I am happy :) We can say SVR 10 result is wonderful. Looking forward for SVR 24.
By the way, still she doesn't feel herself well.
She was contracted 15-20 years ago. Hepatitis C, 1b. Treatment naive. We started 3 month Harvoni treatment and finished on June. We live outside of US
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Congratulations to your mother -- that is a big step forward. Sorry she still feels unwell. Now that her liver is regenerating, may she feel better and better.
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To All,
Thank you for your congratulations. Now it is time to start living again as opposed to being in the PAUSE mode. I am slowly coming out of the bunker I have been living in since 1973. I'm certain many can appreciate that sentiment.
Now is the chance to do something positive, different, retire, give thanks, etc.. Let's not forget those who are not yet cured and encourage them to fight the good fight. This is just the first tidal wave of cures this miracle drug has brought but there will be others. If you are not yet cured, be aware that new combination/cocktails are in the pipeline to combat the more difficult cases. Medical research has cracked the code and total eradication of this virus is in the very near future. Have faith, hope and rest assured that many of us have travelled this long and lonely journey. Good luck & God Bless to all!
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To All,
Thank you for your congratulations. Now it is time to start living again as opposed to being in the PAUSE mode. I am slowly coming out of the bunker I have been living in since 1973. I'm certain many can appreciate that sentiment.
Now is the chance to do something positive, different, retire, give thanks, etc.. Let's not forget those who are not yet cured and encourage them to fight the good fight. This is just the first tidal wave of cures this miracle drug has brought but there will be others. If you are not yet cured, be aware that new combination/cocktails are in the pipeline to combat the more difficult cases. Medical research has cracked the code and total eradication of this virus is in the very near future. Have faith, hope and rest assured that many of us have travelled this long and lonely journey. Good luck & God Bless to all!
Here here! None of us would wish this disease upon anyone and we can never forget those who did not make it. Over the years I have known far too many good people who died of this affliction, leaving their children and even parents to grieve at their early deaths.
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Congrats to you mother Cute!! So happy to hear of her SVR and sending prayers that she begins to feel better soon!!!
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Great numbers for all you guys.so uplifting but I am an 8 wk'er not by choice & CLCll said that there are folks donating unused Harvoni that they were taken off the tx? Can you direct me to those posts? it may be early for me as I am only in week 3 but seems ridiculous to not have every tx naive person on 12wks. I am so worried.
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Hi Rosie13 -
I didn't do an 8 week treatment "by choice" either. That is what the protocols called for because of my low VL, no cirrhosis and being treatment naive. I too was worried about it however so far those fears are unfounded as I hit 4 week SVR last week. This treatment works extremely well and I hope you have the same success that I did!
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. . . I am an 8 wk'er not by choice & CLCll said that there are folks donating unused Harvoni that they were taken off the tx? Can you direct me to those posts? . . .
Rosie, the person who had a spare, unopened bottle is Espo2. Here is a link to the relevant thread:
http://forums.hepmag.com/index.php?topic=3268.msg27657#msg27657
Gnatty
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Thanks Gnatty!
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You're welcome. Congratulations on the huge drop in VL in less than two weeks.
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Please, no discussion about what to do with medication, other than safe disposal. It is illegal to give medication to anyone else. Even pharmacists and doctors have to to through the same channels as we do.
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Congrats, Robin! You should be home free now. Very happy for you!!!
And congratulations to everyone in this thread that has achieved SVR. Thrilled for all! For those who've relapsed, keep the faith that new medications in the pipeline will be available to you soon.
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Hi Sabre!!!!!
Thank you for the congrats on my SVR4 - I was pretty tickled. I am looking forward to hearing your news of SVR12 soon too!!!
When I hear all the news of people achieving SVR I feel blessed and humbled to be a part of this momentous time. That science has come so far. For those that have relapsed never lose hope. Better treatments are coming and you too will have a chance to celebrate!
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Thanks redbird29! Your posts about svr are uplifting.Just trying to relax & quit worrying about political correctness when our lives are on the line.We will all pull thru.
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Ok, I'm not sure if I'm doing this right but here it goes. I took Harvoni for 12 weeks. I was tested every 4 weeks. Since the first test at week 4 of treatment I was undetected!! I am now 4 months post treatment and I'm still undetected so I am considered cured!!! I had no side effects except that it made my potassium go dangerously high!! I take potassium for a heart condition (unrelated to Hep C) I was born with. So if you take potassium and you're on Harvoni be extremely careful! If you have further questions regarding that feel free to pm me.
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Ok, I'm not sure if I'm doing this right but here it goes. I took Harvoni for 12 weeks. I was tested every 4 weeks. Since the first test at week 4 of treatment I was undetected!! I am now 4 months post treatment and I'm still undetected so I am considered cured!!! I had no side effects except that it made my potassium go dangerously high!! I take potassium for a heart condition (unrelated to Hep C) I was born with. So if you take potassium and you're on Harvoni be extremely careful! If you have further questions regarding that feel free to pm me.
Congrats on being cured of HCV, 575to505 !!! Well done! And interesting information about the potassium. I did not know that. Thanks for sharing.
kim
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I want to add my results although have to wait until Oct 22nd to take labs for 12 week post treatment:
66 year old woman
likely infected about 16 years ago
Genotype IA
Fibrosis f2-f3
not sure of viral load prior to treatment but I think ~ 3m
treatment naive
Took Harvoni for 8 weeks
EOT VL undetected
4 wk post tx VL undetected
waiting for Oct 22nd and results -- nervous but hopeful
So happy to read of people being cured and grateful to have had this community even thought I mostly just checked it out now and again.
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I want to add my results although have to wait until Oct 22nd to take labs for 12 week post treatment:
66 year old woman
likely infected about 16 years ago
Genotype IA
Fibrosis f2-f3
not sure of viral load prior to treatment but I think ~ 3m
treatment naive
Took Harvoni for 8 weeks
EOT VL undetected
4 wk post tx VL undetected
waiting for Oct 22nd and results -- nervous but hopeful
So happy to read of people being cured and grateful to have had this community even thought I mostly just checked it out now and again.
The waiting for 12 weeks SVR is the hardest part. For some reason or other I think you should go out and eat a big piece of New York cheese cake then thumb your nose at someone you don't get along with.
This will not help anything but it sure feels good to let a little bit of the tension go every once and a while. I was turning into a grumpy old fart during the 12 week wait from hell because I was not given a 4 week VL test. I guess the test kits in Canada were getting very hard to get and the tech(s) at the infectious disease government lab must have been run off their feet at that time!
So instead I just went fishing and forgot that I was waiting on being freed from the hellish worry and uncertainty that has been with me and so many of us for so many long and tearful years.
All the best to you KATEL and welcome to this great little forum!
Eric Reesor
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Thanks Eric. I like your advice! Yes, waiting is hard. A lot of the time I just get on with things but then sometimes I feel tired and then start to worry. Just one month more to wait. In the meantime life is good. I hope if you have had your final results that you are free now.
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I've decided to post all the results again. I know that there are people who would like to see them. And I know how much it meant for me during tx to follow this thread. If I missed anyone, please let me know.
8 weeks treatment: 25/33 SVR = 75,7%
PAPPY
1. 12 wk post EOT VL status - Detected VL 7.867179 RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Unknown
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – F4
6. Initial VL (date) - Unkown
Lukey
1. 6 wk post EOT VL status - Detected VL of 782,040 RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - 5.7 mil
Juan_81
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) – 47.000
PaulG
1. 12 wk post EOT VL status - 4,833,657 RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown (F3 12 years ago)
6. Initial VL (date) - 2.5 mil
Dragonslayer
1. EOT det 29, 7.5w EOT <12, 11w EOT UND: SVR11, SVR24
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2013)
6. Initial VL (date) - 2.4 mil
Momof3
1. 4 wk post EOT VL status – SVR4, SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status fibroscan jan -15: F0-F1
6. Initial VL (date) - 689,594
Connie
1. EOT 4w VL status – 6000 VL RELAPSE
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis: F2
6. Initial VL (date) – 700,000 (1996)
Valance
1. 12w after EOT: SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis: ?
6. Initial VL (date) – ?
DeeDee
1. 12w after EOT: SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis: F0/F1
6. Initial VL (date) – ?
Reek34
1. EOT VL 1.1 mil (but decreasing alt), retest at 4w EOT: SVR4
2. Treatment duration - 8 wks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis: ?
6. Initial VL (date) – 500.000
catniss
1. Post EOT: SVR6, SVR12
2. Treatment duration - 8 wks
3. tx naive or experienced - ?
4. Genotype – 1a
5. F1-F4 fibrosis: F1
6. Initial VL (date) – < 6m
ppm
1. 12 wk EOT VL status – SVR12
2. Treatment duration - 8 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (12/14) - F0
6. Initial VL (12/14) 4,700,000
superfreak
1.12 wk EOT VL status – SVR12
2. Treatment duration - 8 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (12/14) - ?
6. Initial VL ?
MYCACHE
1. UD 4wk during treatment. 12wk EOT VL 100,000, RELAPSE
2. 8 weeks
3. tx naive
4. Genotype (1a)
5. F1 01/01/2014
6. Initial VL 100,000 12/1/2013
hope4cure
1. 12 w EOT SVR12
2. 8 weeks
3. tx naive
4. Genotype ?
5. F0-F4: ?
6. Initial VL ?
anniemybaby
1. 12 w EOT SVR12
2. 8 weeks
3. tx naive/experienced?
4. Genotype ?
5. F0-F4: ?
6. Initial VL ?
EleanorB
1. 4 w EOT SVR4
2. 8 weeks
3. tx naive/experienced?
4. Genotype ?
5. F0-F4: ?
6. Initial VL 500.000
Karen1124
1. 12 w EOT, 424.000 VL RELAPSE
2. 8 weeks
3. tx naive/experienced?
4. Genotype 1A
5. F0-F4: 2
6. Initial VL 2 mil
Tiger
1. 12 w EOT SVR12
2. 8 weeks
3. tx naive/experienced?
4. Genotype 1b
5. F0-F4: 2
6. Initial VL 500.000
grodeestok
1. 12 weeks eot undetected, SVR12
2. Tx 8 weeks
3. Tx naive
4. Geno 1a
5. F1 Jan 2015
6. 500,000 Jan 2015
Wilson
1. 18 weeks eot undetected, SVR18
2. Tx 8 weeks
3. Tx naive
4. Geno ?
5. F1-F2
6. 2 million
Espo2
1. 8 weeks post eot, SVR8
2. Tx 8 weeks, was 12 w but stopped at 8.
3. Tx experienced
4. Geno 1b
5. F0
6. 4.7 million
motor
1.12 weeks post eot, SVR12
2. Tx 8 weeks
3. Tx naive
4. Geno 1a/CT
5. F2 fibroscan and FibroSure
6. 3.7 million
slw304
1. 10 wk EOT VL status – SVR10
2. 8 wks
3. tx naive
4. Genotype 1a
5. F1 - Biopsy November 2014
6. Initial vl 900,000 - November 2014
Rexray
1. 12 wk EOT VL status – SVR12
2. 8 wks
3. tx naive/experienced ?
4. Genotype ?
5. Fibrosis status: No cirrhosis
6. Initial vl 2,3 mill
hepcme
1. 12 wk EOT VL status – SVR12
2. 8 wks
3. tx naive/experienced ?
4. Genotype 1a
5. Fibrosis status: 2-3
6. Initial vl 2 mill
opaleye
1. 15 wk EOT VL: 170.000 (no prior post tx test) – RELAPSE
2. 8 wks
3. tx naive/experienced : naive
4. Genotype 1a
5. Fibrosis status: FibroSure F1-2 A2 (Oct 2014)
6. Initial vl 2,8 mill
HopefulCamper
1. 12 wk EOT VL status: 378195, RELAPSE
2. 8 wks
3. tx naive/experienced : ?
4. Genotype 1a
5. Fibrosis status: FibroSure F3/F4 (11,4 kPa)
6. Initial vl 2,8 mill
Gramsgrl
1. 12 wk post EOT VL status – SVR12
2. 8 wks
3. tx naive/experienced: exp
4. Genotype 1b
5. Fibrosis status: F2 (grade 2)
6. Initial vl: 6 m
Ruthie
1. 24 wk post EOT VL status – SVR24
2. 8 wks
3. tx naive/experienced ?
4. Genotype ?
5. Fibrosis status: F1
6. Initial vl: 3,5 m
Deborah
1. 24 wk post EOT VL status – SVR24
2. 8 wks
3. tx naive/experienced naive
4. Genotype 1
5. Fibrosis status: no cirrhosis
6. Initial vl: 1 m
Redbird29
1. 4 wk post EOT VL status – SVR4
2. 8 wks
3. tx naive/experienced naive
4. Genotype 1a
5. Fibrosis status: F1/F2 Fibrosure
6. Initial vl: 468.000
katel
1. 4 wk post EOT VL status – SVR4
2. 8 wks
3. tx naive/experienced naive
4. Genotype 1a
5. Fibrosis status: F2/F3 Fibrosure
6. Initial vl: 3 million
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12 weeks treatment: 76/85 = 89,4%
Mm
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL (date) – 5.9 mil
Nicole_1234
1. Post EOT VL status – SVR12, SVR18, SVR24
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - 0.65 mil
JillLynn
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - 1.5 mil
Kate0b1
1. 12 wk Post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
Katie
1. EOT det <12, 7 wk Post EOT VL– SVR7, SVR16, SVR24
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - no cirrhosis
6. Initial VL (date) - 2.6 mil
Islandgirl
1. 4 wk Post EOT VL status – SVR4
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
JoeK9999
1. 12 wk Post EOT VL status – SVR12, SVR24
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2012)
6. Initial VL (date) - 3.8 mil
Long_Haul
1. Post EOT VL status – SVR4, SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F4 (2000)
6. Initial VL (date) - NA
terih
1. 3 wk Post EOT VL status – Det. 414,111 - RELAPSE
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2-F3 (11/2014)
6. Initial VL (date) - 2.56 mil (11/2014)
marv777
1. 12 wk Post EOT VL status – SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) - 6 mil
Paleface
1. post EOT VL status – SVR12, SVR24
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1-F2
6. Initial VL (date) - 5.7 mil
Cally Balmoral
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - Unknown
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) – Unknown
Jonny_Wayne
1. 12 wk post EOT VL status 1,7 million - RELAPSE
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F4
6. Initial VL (date) – Unknown
DLedin
1. 12 wk post EOT VL status - SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) – unknown
Dandelion
1. 4 wk post EOT VL status - 510000 RELAPSE
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - F2-F4 Fibrosure
6. Initial VL (date) - 6.5 mil
Anand
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Initial VL (date) - 1.18 mil
Mikee
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) – 2.8 mil
Mike Conwell
1. 4 wk post EOT VL status – SVR4
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Initial VL (date) – 11 mil
007GUY
1. post EOT VL status – SVR4, SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) – ? mil
KATE101
1. 6 wk post EOT VL status – SVR6
2. Treatment duration - 12 weeks
3. tx naive or experienced - TE
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – F2
6. Initial VL (date) – 1,5 mil
MEG
1. post EOT VL status – SVR4, SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced –
4. Genotype (1a or 1b) - 1a, TT
5. F1-F4 fibrosis status (date) – F0
6. Initial VL (date) – 2 mil
workingonit
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (date) – ? mil
HCVDX30
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1a
5. biopsy 2013 F4
6. Initial VL (date) – ? mil
Charly8
1. 4 wk post EOT VL status – SVR4
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx Experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status - Fibrosure- F3 (Dec 2014), Fibroscan F0-F1 (Mar 2015)
6. Initial VL (date) - 1.05 Mil (Dec 2014)
Bituman
1. Post tx results: SVR4, SVR12
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status - biopsy- F1 (2007)
6. Initial VL (date) – 3.59 Mil (jan 2015)
ROGER
1. Post TX, SVR12
2. Treatment duration - 12 weeks
3. tx naive
4. Genotype 1a
5. F3 fibrosis status - 11/21/2014
6. Initial VL - 313,593 11/21/2014
Marnie
1. 4wk EOT VL status = SVR4
2. Treatment duration = 12 weeks Harvoni
3. Experienced
4. Genotype 1a
5. F1 fibrosis status (Jan 2015)
6. Initial VL 1.1million Dec 2014
BOB V
1. post EOT VL status = SVR12, SVR24
2. Treatment duration = 12 weeks Harvoni
3. Experienced
4. Genotype 1a
5. normal liver by ultrasound 2014
6. Initial VL 3,7 million
Perca05
1. 4WK EOT VL: 20 (AST 19 ALT 15), 12 WK (AST 20 ALT 15), SVR12
2. Treatment duration: 12 Weeks
3. tx naive or experienced: Experienced
4. Genotype (1a or 1b): 1a
5. F1-F4 fibrosis status (date): not known
6. Initial VL (date): Starting VL was 4.5 million
TerryLF
1. 2w EOT VL status: 120 = RELAPSE?
2. Treatment duration = 12 weeks Harvoni
3. naive
4. Genotype: ?
5. F4
6. Initial VL: 100.000
Junkyard
1. Post EOT VL status = SVR4, SVR12
2. Treatment duration = 12 weeks Harvoni (plus riba)
3. Experienced
4. Genotype 1a
5. Liver status: ?
6. Initial VL 960.000
CHepCFree
1. Post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1
6. Initial VL (date) 7,200,000
Ollie
1. 12 wk EOT VL status – SVR12
2. Treatment duration- 12 weeks
3. tx naive or experienced-naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) F1 -1/08
6. Initial VL (date) 600,000 when starting Harvoni in Dec. 2014
texasone
1. 4 wk and 5 w post EOT– RELAPSE
2. Treatment duration- 12 weeks
3. tx naive or experienced-naive: ?
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) ?
6. Initial VL (date) ?
Tutu
1. 12w EOT– SVR12
2. Treatment duration- 12 weeks
3. tx naive or experienced: naive
4. Genotype 1b
5. F1-F4 fibrosis status: F3
6. Initial VL (date) ?
Grateful 52
1. Post EOT VL status SVR4, SVR12
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4 fibrosis status unknown, ultrasound only- showed nothing
6. Initial VL -1 mil in mid 2014, likely infected 1972.
Atomic dog
1. 4wk EOT VL status SVR4, SVR12
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4: F2
6. Initial VL -1,5 million
HHburme
1. Post EOT 12 w VL status: 3 million RELAPSE
2. Treatment duration 12 weeks
3. tx naive
4. Genotype (1a)
5. F1-F4: F2
6. Initial VL -1,5 million
Barbs
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni + Ribavirin
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - Nov 2014 - 1.8 million
amy1662
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – F1/F2
6. Initial VL (date) - ?
Coloradogirl
1. Post EOT status – SVR4, SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – 580.000
Bestmomy
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – 1,8 mil
Karen3717
1. Post EOT status – SVR4, SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2
6. Initial VL (date) – 316.000
GLCII
1.Post EOT status – SVR4, SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - experienced
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL (date) – 12 mil
Pete
1. 4 week EOT status – VL 3361, confirmed at 12w post EOT RELAPSE
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1a
5. Fibrosis status: F3 by biopsy 2006, dx comp cirrhosis 12/2014
6. Initial VL (date) – 4,6 M
tm
1. Post EOT status – SVR4, SVR8, SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced – 2 prior tx
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis status (date): F0-F1
6. Initial VL (date) – ?
moma
1. 12 week EOT status – SVR12
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – ?
5. F1-F4 fibrosis status (date) – ?
6. Initial VL (date) – ?
Mike2
1. Post EOT VL status Undetected!!! SVR7, SVR12
2. Treatment duration: 12 weeks
3. tx naive
4. GT ?
5. fibrosis: ?
6. Initial VL:?
gug
1.12 wk EOT VL SVR12
2. Treatment duration: 12 weeks
3. tx naive/experienced:?
4. GT 1A
5. fibrosis: 1-2
6. Initial VL:46 million
belgianista
1.6 wk EOT VL SVR6
2. Treatment duration: 12 weeks
3. tx naive/experienced: TE
4. GT ?
5. fibrosis: Fibrosure F4, Fibroscan F0/F1
6. Initial VL:?
icantwait
1.12 wk EOT VL SVR12
2. Treatment duration: 12 weeks
3. tx naive/experienced: ?
4. GT 1
5. fibrosis: F3
6. Initial VL: 3,5 mill
amy1662
1.12 wk EOT VL SVR12
2. Treatment duration: 12 weeks
3. tx naive/experienced: exp
4. GT 1a
5. fibrosis: F1-F2
6. Initial VL: ?
Bixter
1. post EOT: SVR6, SVR12
2. Harvoni 12 weeks
3. Tx experienced
4. 1a
5. F3
6. 1.8 M
mdj
1. Post EOT VL: SVR4, SVR8, SVR12
2. Treatment duration-12 weeks
3. tx naive
4. Genotype 1a
5. fibrosis status F3/F4
6. Initial VL (2.1million/Oct 2014; retest 700,000/March 2015)
SunisOut
1. 4w EOT und, 8wk EOT VL: 270, 12 w EOT und: SVR12
2. Treatment duration-12 weeks plus riba
3. tx naive
4. Genotype 1a
5. fibrosis status F4, A3
6. Initial VL 5.9 m
apache
1. Post EOT VL: SVR4, SVR12
2. Treatment duration: 12 weeks
3. tx naive
4. Genotype 1a
5. fibrosis status: F0-1
6. Initial VL: 2.94 million
xkilo
1. 12wk EOT VL: SVR12
2. Treatment duration: 12 weeks
3. tx experienced
4. Genotype 1a
5. fibrosis status: F3 (Jan2015)
6. Initial VL: 13 million (Jan 2015)
PatEquack
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-
6. Initial VL (date) - 3 mil
waitingforrain
1. 4 wk post EOT VL status – SVR4
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. fibrosis status: mild fibrosis
6. Initial VL (date) - ?
lovinglife
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) - 1
5. fibrosis status: F1
6. Initial VL (date) – 5 mill
Blue
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) – 1b
5. fibrosis status: F1
6. Initial VL (date) – 4.8 mill
koifish54
1. 12 wk post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX naive
4. Genotype (1a or 1b) – 1a
5. fibrosis status: Fibrosure F2-F4
6. Initial VL (date) – ?
baffled5555
1.4 wk post EOT VL status – SVR4
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – 1b
5. fibrosis status: Fibrosure F4
6. Initial VL (date) – ?
tmf2
1.3 wk post EOT VL status 3 mill – RELAPSE
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – ?
5. fibrosis status: Fibrosure F4
6. Initial VL (date) – ?
davidsconfused
1. EOT - UND / 12 wk – UND, SVR12
2. Treatment duration - 12 weeks
3. TX Native
4. Genotype 1b
5. fibrosis status: ?
6. Initial VL (date) – ?
longtrip
1. EOT - UND / 18 wk – UND, SVR18
2. Treatment duration - 12 weeks
3. TX Native/Experienced: ?
4. Genotype ?
5. fibrosis status: ?
6. Initial VL (date) – ?
Ledoc01
1. 12 week post tx, SVR12
2. Treatment duration - 12 weeks
3. TX Native/Experienced: ?
4. Genotype ?
5. fibrosis status: F4
6. Initial VL (date) – 2.7 mill
mikelhc
1. 12 week post tx, SVR12
2. Treatment duration - 12 weeks
3. TX Native/Exp: exp (monotherapy 20 years ago)
4. Genotype ?
5. fibrosis status: ?
6. Initial VL (date) – ?
DisabledHepcat
1. Post EOT, SVR5, SVR23
2. Treatment duration - 12 weeks
3. TX Native/Experienced: exp
4. Genotype ?
5. fibrosis status: ?
6. Initial VL (date) – 1.2 mill
SIXFOOTFOUR
1. 11week post tx, SVR11
2. Treatment duration - 12 weeks
3. TX Native/Experienced: ?
4. Genotype 1b
5. fibrosis status: 3-4
6. Initial VL (date: > 6 mill
Imbb
1. 7 week post tx, SVR7
2. Treatment duration - 12 weeks
3. TX Native/Experienced: naive
4. Genotype 1a
5. fibrosis status: F 2-3
6. Initial VL (date: ?
Phil
1. 12 week post tx, SVR12
2. Treatment duration - 12 weeks
3. TX Native/Experienced: naive
4. Genotype 1a
5. fibrosis status: F2 by liver biopsy 2008. F4 by FibroSURE 2015
6. Initial VL 11,256
TTSP
1. 12 week post tx, SVR12
2. Treatment duration - 12 weeks
3. TX Native/Experienced: naive
4. Genotype 1b
5. fibrosis status: F4
6. Initial VL ?
WaltFrazier
1. 13 week post tx, SVR13
2. Treatment duration - 12 weeks
3. TX Native/Experienced: Exp
4. Genotype 1a
5. fibrosis status: F2-F3 (Jan 2015)
6. Initial VL 2,5 mill
Sweetie1
1. Post tx, SVR12, SVR24
2. Treatment duration - 12 weeks
3. TX Native/Experienced: ?
4. Genotype ?
5. fibrosis status: ?
6. Initial VL ?
PintoLady
1. Post tx, SVR4, SVR12
2. Treatment duration - 12 weeks
3. TX Native/Experienced: 3 times non-responder
4. Genotype 1a
5. fibrosis status: F2 fibroscan 2015
6. Initial VL 7,6 million
575to505
1. Post tx, SVR12, SVR16
2. Treatment duration - 12 weeks
3. TX Native/Experienced: ?
4. Genotype: ?
5. fibrosis status: F4?
6. Initial VL: ?
katmakiah
1. 12 w Post tx, VL 1,5 m, RELAPSE
2. Treatment duration - 12 weeks
3. TX Native/Experienced: naive
4. Genotype: 1a
5. fibrosis status: F4
6. Initial VL: ?
KiminTheForest
1. Post tx, SVR4
2. Treatment duration - 12 weeks (+riba)
3. TX Native/Experienced: naive
4. Genotype 3a
5. fibrosis status: F2 fibroscan 2015
6. Initial VL 4 million
janelise49
1. Post tx, SVR4
2. Treatment duration - 12 weeks
3. TX Native/Experienced: exp
4. Genotype: ?
5. fibrosis status: ?
6. Initial VL 5.9 million
ragnarok
1. Post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - Naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - ?
6. Initial VL (Jan. 2015): Under six million.
WholeFoods
1. Post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) - ?
5. F1-F4 fibrosis status (date) – F2
6. Initial VL (Jan. 2015): 300.000
debham
1. Post EOT VL status – SVR12
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – no fibrosis
6. Initial VL (Jan. 2015): 300.000
KC
1. Post EOT VL status – SVR14
2. Treatment duration - 12 weeks
3. tx naive or experienced - ?
4. Genotype (1a or 1b) – ?
5. F1-F4 fibrosis status (date) – F1/F2
6. Initial VL (Jan. 2015): 3,5 m
pjggibson
1. Post EOT VL status – SVR4
2. Treatment duration - 12 weeks
3. tx naive or experienced - naive
4. Genotype (1a or 1b) – 1b
5. F1-F4 fibrosis status (date) – F4
6. Initial VL (Jan. 2015): 5 million
-
Bixter: Thanks for doing this! You are appreciated!
Katie
-
24 weeks treatment: 9/9 = 100%
ma snart
1. Post EOT VL status = SVR8, SVR12
2. Treatment duration = 24 weeks Harvoni
3. Experienced/naive; ?
4. Genotype 1b
5. Fibrosis status: ?
6. Initial VL 8,5 million
Lynn K
1. post EOT VL status: SVR4, SVR12
2. Treatment duration Harvoni 24 weeks, Riba 15 weeks
3. tx naive or experienced: Experienced (5th treatment)
4. Genotype: 1a
5. F1-F4 fibrosis status: F4 Cirrhosis 01/08 Biopsy
6. Initial VL: 2,422,260 Log 10=6.384
mario555
1. Post EOT VL status: SVR4, SVR12
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: Experienced (3rd treatment)
4. Genotype: 1a
5. F1-F4 fibrosis status: F4
6. Initial VL: 8 mill
mikeyman
1. 12wk after EOT VL status: SVR12
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: Experienced (3rd treatment)
4. Genotype: 1
5. F1-F4 fibrosis status: F4
6. Initial VL: 1,529,773
harvonitoo
1. 12wk after EOT VL status: SVR12
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: ?
4. Genotype: ?
5. F1-F4 fibrosis status: F4
6. Initial VL: ?
Mugwump
1. 12wk after EOT VL status: SVR12
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: exp
4. Genotype: ?
5. F1-F4 fibrosis status: F4
6. Initial VL: 3 mill
Vicky
1. 4wk after EOT VL status: SVR4
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: exp
4. Genotype: ?
5. F1-F4 fibrosis status: F4
6. Initial VL: ?
Gary
1. Post EOT VL status: SVR12
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: exp
4. Genotype: ?
5. F1-F4 fibrosis status: F4
6. Initial VL: ?
chino1969
1. Post EOT VL status: SVR5
2. Treatment duration Harvoni 24 weeks,
3. tx naive or experienced: exp
4. Genotype: 1a
5. F1-F4 fibrosis status: F4
6. Initial VL: 6,7 m
-----------------------------------------------
16 weeks treatment: 2/4 = 50%?
SAM1224
Post treatment – SVR4, SVR12
16 weeks Harvoni
tx naive or experienced: naive
Gt 1b
F4 fibrosure 2014
6. Initial VL: 3million 2014
jacattack
Post TX: SVR4, 13w post <15 detected RELAPSE?
16 weeks Harvoni
tx naive
Gt:?
Fibrosis status: ?
VL: ?
terryerdman
1. UND w4 during tx, EOT VL 301, added 4 w. EOT VL 900, RELAPSE
2. Treatment duration – 12 plus 4 weeks
3. TX Native/Experienced: naive
4. Genotype ?
5. fibrosis status: F4
6. Initial VL (date) – 1.2 mill
Cure4life
Post EOT: SVR12
16 weeks Harvoni (5 w of Riba)
tx naive or experienced: naive
Gt 4
Moderate fibrosist
6. Initial VL: 84.000
-------------------------------------------
20 weeks treatment: 1/1 = 100%
cate
1. 4wk EOT VL status = SVR4, SVR12
2. Treatment duration = 20 weeks Harvoni
3. naive
4. Genotype 1a
5. early cirrhosis
6. Initial VL 2,5 million
-
Bixter: Thanks for doing this! You are appreciated!
Katie
Ditto that! This is really valuable data, Bixter - and interesting. I notice that all the relapsers on 8 weeks of treatment were 1a, none were 1b. Of course, there seem to be a lot more GT 1a's treating in general than 1b's. Still, perhaps GT 1b is slightly easier to treat? With Viekira Pak for example, GT 1b doesn't usually need ribavirin. GT 1a does. Maybe the 8-week Harvoni treatment recommendation should, at very least, be rescinded for GT 1a.
kim
-
Posted too quickly - here are the final two results:
21 weeks treatment: 1/1 = 100%
Camper
1. 5wk EOT VL status = SVR5
2. Treatment duration = 21 weeks Harvoni
3. Exp/naive: ?
4. Genotype ?
5. Fibrosis status: ?
6. Initial VL ?
--------------------------------------------
8 and 20 weeks treatment: 1/1 = 100%
BattleTheBeast
1. 12wk after EOT VL status: SVR12
2. Treatment duration: S/O 8 w and Harvoni 20 weeks
3. tx naive or experienced: naive
4. Genotype: 1a
5. F1-F4 fibrosis status: F4
6. Initial VL: 8 mill
-
. . . adding my thanks. As a nerd/data head, I have some idea of the time Bixter must have spent in order to bring us this highly useful information. -Gnatty
-
Thanks BIXTER
for the hard shuffle through the forum to see what is happening.
BTW I am/was genotype 1a and child-pugh A. My cirrhosis is fairly well compensated so far thank God!
So I was down to an 85% chance of seeing 2018 through. I can only sincerely hope that the numbers reflected in this forum are not too close to real world cure numbers and much higher numbers of people who have a breeze of a time being treated for 8 or 12 weeks do clear.
I do not think it financially sensible to scrimp on treatment duration when the costs of a retreat are so unmercifully high. So here is praying that the forum numbers are indeed effected in a way that is slanting the numbers of cures way down from the clinical trial numbers!!
Eric
-
Wow awesome job Bixter!!! I took the liberty of editing your post to add my starting V/L data
Hi Kim yes with Harvoni GT1b have had better results that 1a
Clinical trial ION-3
8 week Harvoni GT 1a 93% GT 1b 98%
12 week Harvoni GT 1a 96% GT 1b 98%
the clinical trial results are included on the prescribing information sheet section 14
https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
Often Clinical trial results are better than real world results for innumerable reasons.
-
Hi Kim yes with Harvoni GT1b have had better results that 1a
Clinical trial ION-3
8 week Harvoni GT 1a 93% GT 1b 98%
12 week Harvoni GT 1a 96% GT 1b 98%
the clinical trial results are included on the prescribing information sheet section 14
https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
Often Clinical trial results are better than real world results for innumerable reasons.
Interesting. Thanks, Lynn.
kim
-
Bixter,
Great body of work! I can't imagine the amount of time & patience needed to compile that much info. Very nice to see all those results. Encouraging beyond words.Especially since My 4 week labs got screwed up. Have to wait for EOT for results, then hurry up & wait for 12 and 24 week results. I am very grateful to You for this body of work. My attention span would have fizzled out way to quit. Ten more days Tx. for Me.
Again , thanks & kudos to You!
-
I just went to The HARVONI Wall to get my commemorative key chain
http://www.harvoni.com/taking-harvoni/harvoni-wall
Looks like they are collecting stats on state by state cures you can also say you are willing to be contacted to tell your cure story but you don't have to to get the gift
-
Thank you Bixter!
-
Thanks Bixter for keeping up with all the info, it is so useful! I just took my EOT 24 week SVR test on the 22nd. In Canada it seems to take a while for viral load results, I did get all my other results back and everything looked great, so as soon as I hear of my VL results I will update!
-
Much thanks, Bixter... Im still wondering what happened to Charly8, the author of this thread, who had been tabulating these results...
At any rate re this:
-------------------------------
16 weeks treatment: 2/4 = 50%?
jacattack
Post TX: SVR4, 13w post <15 detected RELAPSE?
16 weeks Harvoni
tx naive
Gt:?
Fibrosis status: ?
VL: ?
---------------------------------
Once you achieve SVR4, the odds of relapse with Harvoni are tiny as SVR4 is 98.5% predictive of SVR12. That, combined with the fact that it's highly unlikely that a replicating virus after 12 wks post treatment will only test <LLOQ, I'm firmly in the camp that believes this to be a false reading, and the result is most likely to endure as SVR.
-
I agree with Dragonslayer and hope some of those that relapsed have a follow up test because, look what happened with the 2 of us!
Bixter can only tabulate the results that have been reported and what an outstanding job he did, taking his own time and energy for the rest of us.Thanks again Bixter!
Katie
Soggy day in my rain forest today. I had a wonderful apple crop and the day before I planned on harvesting them, a bear showed up in the wee hours and ate the majority, just leaving a few in the top branches! ??? Stinker! Tiny bits and pieces were scattered where the grass was flattened so he had a feast in style, laying down on a soft bed of grass. ;D At least he didn't break up the branches. It is funny how they wait until the apples are perfectly ripe. I salvaged what I could and froze up a couple gallons for winter apple pies. That's my story for today! ;)
-
Damn, Katie, thats not a story you hear every day; 'a bear ate my apples!' .. Maybe some barbed wire at the base of the trees? There must be Something to do.... We mere mortals contend with rabbits and raccoons, but you get it all up there!!
-
And to think I had a problem with 'coons , 'possums , ringtail cats , and armadillos!!!!!!!
-
Hahahaha...I just take bears in stride and became quite fond of them when I did field research...cautious but fond. They are eating machines this time of year and I am sure the ripe apples fragrance brings them in for the treat. The apples were so flavorful this year. Had some close bear encounters in the field and respect their strength and agility. For a couple years in a row I didn't get a single apple because of an old black bear that camps out above me.Then no one has bothered them for the past 2 years so I figured he died. I don't want barbed wire or an electric fence so I just don't worry about it. They come and go and now my trees are tall enough where the bears can't reach some of the fruit. I'll share with them and not complain much. At least he didn't break up the branches which irritates me, and I still got a bucket full.
Sorry to post this unrelated stuff, but sometimes it is nice just to read a story other than one of Hep C. We seem to get to know one another here and that's part of building trust and being open with such personal information, so it's fun to share part of my life.
Have a good week, everyone!
Katie
-
Hi,
Bixter you have forgotten my mother.
12 week treatment - SVR 10 Undetected.
-
Hi Cute
I copied this from the beginning of the thread. Could you enter your moms info in this format as much information as you have and are willing to share?
Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk EOT VL status
2. Treatment duration
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
What you have so far is
1. 4wk - 12 wk EOT VL status - SVR 10
2. Treatment duration - 12 Weeks
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
The SVR 10 that is 10 weeks after she completed her treatment correct?
Congrats to you both!
Lynn
-
1. EOT VL status - SVR 10 - Undetected
2. Treatment duration - 12 Weeks
3. tx naive
4. Genotype 1b
5. F3 fibrosis (february, 2015)
6. Initial VL - 381 000 IU/ml (march,2015)
-
Hi Cute
I copied this from the beginning of the thread. Could you enter your moms info in this format as much information as you have and are willing to share?
Please list the following: (copy and paste into your post as I have done below to keep this thread clean)
1. 4wk - 12 wk EOT VL status
2. Treatment duration
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
What you have so far is
1. 4wk - 12 wk EOT VL status - SVR 10
2. Treatment duration - 12 Weeks
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
The SVR 10 that is 10 weeks after she completed her treatment correct?
Congrats to you both!
Lynn
Lynn,
Yes, you are correct. SVR 10 means that she completed the treatment 10 weeks ago.
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THANK YOU BIXTER!!!
I know I am one who also appreciates "seeing" the results posted and I feel blessed to be included. SVR4 on my 8 week tx and looking forward to the day we all post SVR12!
-
Thanks to everyone for your response, it feels good to share with you all.
Cute: I'll add your mums result, thank you for letting me know.
Dragonslayer: I'm sure you are right about jacattac. Just didn't know what to write, that's why I marked it red and added a question mark. I guess I could just as well have written SVR?
Unfortunately we might never know...
-
Thanks to everyone for your response, it feels good to share with you all.
Cute: I'll add your mums result, thank you for letting me know.
Dragonslayer: I'm sure you are right about jacattac. Just didn't know what to write, that's why I marked it red and added a question mark. I guess I could just as well have written SVR?
Unfortunately we might never know...
Bix, I think you posted it correctly. Its impossible to know anything for sure unless the info is provided to us. .I was just commenting on it because I felt it very unlikely that youd have a viral load < LLOQ at 12 wks post treatment that was any kind of relapse. I think it just doesnt work that way. At any rate, your amalagamation of the data is very useful, and no small undertaking, since the data on this board is all over the place.
Thanks again!!!
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Can you explain LLOQ?
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technical definition:
The LLOQ refers to the lowest HCV RNA concentration that is within the validated quantitative range of an assay. An undetectable result indicates that HCV RNA was not detected in the sample. The limit of detection and the limit of quantification vary according to the assay used.
Basically the test has the ability to "count" number of virus in a blood sample down to a point the LLOQ. Below that number of virus particles (IU/mL) international units per milliliter of blood the test can still detect the presence of the virus DNA but can't determine how many there are per mL.
So a LLOQ of say 15 for example the test can detect there is virus DNA present in the sample but only knows there are less than 15 IU/mL in the test sample.
And whether those are actual virus cells or just remnants of broken virus cell is hard to say
Hope that helps
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Lynn supplied the definition. Here is what the acronym LLOQ stands for:
Lower Limit of Quantification
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Thanks Lynn & Gnatty for the explanation. I had not seen that on any of my labs yet so it's good to know.
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Rosie, different labs have different ways of expressing these things. Following the test result there may be a paragraph or more of explanation which may or may not use the LLOQ acronym.
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Good to know,Gnatty. 4 wk. .labs are Friday!
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I have a question..Does <12 Not Detected mean the same as undetected??
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It almost certainly does mean undetected. It is telling you that that particular assay can't COUNT fewer than 12 international units per mL, but it can still detect some if it is there. Your assay is more sensitive (better) than most assays, which can't count fewer than 15.
Quest Diagnostics, for example, says "<15 Not Detected." The result is followed by some text which includes "For more information on this test, go to <link>" which includes the following:
A "<15 Detected" means the assay was able to detect HCV RNA but was not able to accurately quantitate the viral load. A "<15 Not Detected" means the assay did not detect HCV RNA . . . .
Congratulations!
Gnatty
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Thank you, that's what I got on my SVR4..I go today to have my 12 wk post treatment blood work done. Wish me luck, I'm nervous!!!
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Best of luck. I know how you are feeling, my daughter just had her blood drawn after her first 4 weeks of treatment.
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Thank you, that's what I got on my SVR4..I go today to have my 12 wk post treatment blood work done. Wish me luck, I'm nervous!!!
Good luck on today's labs, baffled! I'm sure you'll do great!! :)
kim
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I have seen that SVR 4 correlates about 98.5% with SVR 12 so odds are definately in your favor you are in the home stretch!
Good luck
Lynn
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Hello all,
1. 12 week post EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - Treatment naive
4. Genotype (1a or 1b) - 1 (just plain old 1)
5. F1-F4 fibrosis status (03/2015) - F2
6. Initial VL (03/2015) - 190,000
Feels incredible.
Wishing the best for all of those who are in treatment or on the wait list, and for those who've relapsed, I hope the new meds in the pipeline are your ticket to SVR.
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So incredible Sabre!! You are on your way! I feel like @ 63 my world is getting so full of possibilities that I had for so long given up on. Just yesterday ( day 26) I trapped a possum who had moved into the garage. I was hiking into the woods to place him in a pristine location for the rest of his life (hopefully) ;). I never would have done that before. Harvoni high or Harvoni just do it! The UPS driver just deliverd bottle #2 . Labs tomorrow...not even worried!
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Hello all,
1. 12 week post EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - Treatment naive
4. Genotype (1a or 1b) - 1 (just plain old 1)
5. F1-F4 fibrosis status (03/2015) - F2
6. Initial VL (03/2015) - 190,000
Feels incredible.
Wishing the best for all of those who are in treatment or on the wait list, and for those who've relapsed, I hope the new meds in the pipeline are your ticket to SVR.
YAAAAHHHOOEEEYYYYY FOR YOU SABRE!!!!
What wonderful news to hear!!! I hope you enjoy your "new" lease on life and wish you all the very best!!!!
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Wishing the best for all of those who are in treatment or on the wait list, and for those who've relapsed, I hope the new meds in the pipeline are your ticket to SVR.
Congratulations, Sabre, and thanks for such a beautifully expressed wish.
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Thanks all!
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Hi all,
As you know, I managed to cure mother from Hepatitis C (according to the results she achieved SVR10 - undetected, next step is SVR24).
But something wrong happens with her. Her liver is worst condition now. She has ascites and fever. Moreover, she had the surgery. Her uterus was removed.
Seems her F3 fibrosis developed to F4 stage. It is very sad to me. All of them happened after successful treatment with Harvoni. I was happy that we killed virus and finally her liver would start its healing process. But now we have totally different picture.
I respect the opinion of the community. Is it possible that her liver will start healing process? How long does it take time? Is anybody here who has already been observing the healing of his/her liver?
All your recommendations are brilliant.
I am so hopeful that her liver will regenerate itself, even there are not so many chances :(
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If she has just gone from F3 to F4 she still should be ok I have been F4 for almost 8 years now.
However a fever is a problem and she should see her doctor many things cause fever often infection but cirrhosis does not cause fever.
It is said about 50% of patients with cirrhosis may have imrovemebt with the co diction of their liver but with cure of hep c her liver should not get any worse from this point forwards however we with cirrhosis are at increased risk of liver cancer although that risk is also reduced with cure.
If the ascities is significant the fever could be caused by an infection in the fluid in her abdomin which is very serious. But in any event she should be seen by her doctor soon to find out the reason for her fever.
She can have a long and full live with early cirrhosis as long as she takes care of her liver and flows her doctors recommendations
Good luck to you both
Lynn
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Just received my 24 weeks SVR test.... Not detected!! Cured cured cured!!! I feel amazing, it doesn't even seem real! After having this my entire life it is strange to say I am free from hep c! The best thing is I don't have to worry am I going to be around for my kids, I can now kiss their owes without panic! I thank everyone for the support!!
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It's so inspiring to hear all those cured from this disease! Congratulations and thank you for sharing with us and holding the space for us to follow! Bree
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Congrats to you Momo and wishing you all the very best in your future life!!
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1. 12 weeks Undetected SVR
2. Treatment duration: 12 weeks
3. tx naive
4. Genotype 1b
5. F1
6. Initial VL 625,000
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Momof3, you are an inspiration to all!So happy for you!Thanks so much for posting your super results..
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BIXTER. I just wanted to add my thanks also for your outstanding work! I'm an accountant and I can appreciate the time it takes to tabulate through all the infos. You produce results that help large number of people in their quest for a cure!
I'm always amazed when thinking about the easy ride we have with Harvoni compared to the previous treatments available. Interferon makes me think of our great old days medicine like Leaches and Blood letting!!!
Although I suffered during my 24 weeks treatment, my sides following the end of treatment are slowly abating. It will be 24 weeks post in 3 weeks and I'll make sure to post my results as soon as I get them. Don't hold your breath! I live in Eastern Canada and I think they carry liver test results by mules! It takes upward of 8 weeks to get results here and even if I'd be willing to pay let say $10,000, there is nowhere to buy tests here! I am allowed to buy things that pollute as much as I want but I can't buy health services!
Anyway, please continue and yes, I'm curious to know what happened with Charly8. Maybe Lynn K could send a friendly personal message to let him know we all miss him! Good luck to everyone!
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Congrats, Momof3! You've been given a new lease. Enjoy your HCV-free life!
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Hello Mario, thank you so much for your kind words. And believe me, I know what you mean by not being able to buy health service, it can be very frustrating. But 8 weeks is an incredible long time to wait. If you have to wait 8 weeks this time too you will have the results at Christmas Eve. Best Christmas gift ever!
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Hi Bixter. This is exactly what I am counting on, a Christmas gift! I also kept my first bottle to frame it IF I'm still und. We might bitch and holler about sides but, it seems to do the job! Harvoni is our key to a healthier life!
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Hello Everyone. I just wanted to report my status. I just tested, and I am Negative. It is about 1 year since the beginning of my treatment, in reality SVR 40.
I give all the glory to my Lord, and savior Jesus Christ. Through him, nothing is impossible.
I will continually pray for everyone.
Have a great afternoon and God Bless!
HCV+ 2010 - Born 1981 ~ Geno 1a
Tx Harvoni - 8 weeks ~ 11/1/2014
Treatment naïve
Pre Tx : ALT & AST slightly elevated ~ VL : 47,000 10/21/2014
3 Wk on Harvoni: ALT & AST - Normal ~ VL : Undetected
SVR12: ALT & AST - Normal ~ VL : Undetected ~ 3/19/2015
SVR40: ALT & AST - Normal ~ VL: Undetected ~ 10/03/2015
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Juan!!!!! Great news & an 8 weeker to boot! You give me renewed hope that 8 weeks will be enough. Thanks for letting us know...& the prayers !
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You are welcome Rosie! 8 weeks is enough... I didn't do anything special. I drank lots of water. And took my pill everyday at the same time... and thank you!
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Great news, after four weeks on Harvoni, my daughter is undetected. I realize that she still has a way to go for SVR 12 but it's a great start. For 20 years I've been praying for a miracle cure and I think my prayers have been answered.
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Great news, after four weeks on Harvoni, my daughter is undetected. I realize that she still has a way to go for SVR 12 but it's a great start. For 20 years I've been praying for a miracle cure and I think my prayers have been answered.
Phenomenal news! Congratulations to both of you!!! :)
kim
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Congratulations All!!!
And Amen Juan!
So GREAT Concerned Father!
These are WONDERFUL stories of hope, courage and delivery!!! <3 <3 <3
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Whoo hoooo Concerned DAD! Your daughter is free!
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MY CONGRATULATIONS CONCERNED FATHER!!!
GREAT NEWS :) :)
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Great news, after four weeks on Harvoni, my daughter is undetected. I realize that she still has a way to go for SVR 12 but it's a great start. For 20 years I've been praying for a miracle cure and I think my prayers have been answered.
The first time you hear the words virus undetected the joy of knowing that you have the best chance possible to forget about HCV and how it effects you in everyday life is wonderful!
HCV infection becomes a burden no one should shoulder.
I am so happy that your daughter will have a life without HCV, it is a miracle few thought could happen and your faith in her helped greatly, of this I am certain.
All the best to you and your daughter.
Eric
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genotype 1a
fibroscan 1
Treatment Naive
vl 1.5 mil
8 week Harvoni
4 wk in tx - undetected
EOT - undetected
4 wk SVR - undetected - Feeling Hopeful
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genotype 1a
fibroscan 1
Treatment Naive
vl 1.5 mil
8 week Harvoni
4 wk in tx - undetected
EOT - undetected
4 wk SVR - undetected - Feeling Hopeful
Congrats on your SVR4 Lakelady! And welcome to the forums. :)
kim
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Congrats Lakelady!
Looks like another dragon is heading to the bone yard!
Best wishes, Mike
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Lakelady! You are rockin' the numbers & so happy for you! Hopeful is right & by new years eve you will turning the page.2016 should be an epic year for most of us!
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Hey all, posted all my details when this thread first started. Just got my 24 weeks /6 months post tx results. Still undetected!
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Grodeestok,it doesn't get an better than that! Congrats on your milestone!
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Hey all, posted all my details when this thread first started. Just got my 24 weeks /6 months post tx results. Still undetected!
Way to go, grodeestok!! Congrats on your SVR24!
kim
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Thanks friends. Best of luck to everyone! It will happen!
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Tiger you still on here? How are your numbers?
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Thanks for the nice replies, new to posting but during treatment I have been a stalker. Hopefully I may be one of those that helps up the percentage of 8 weekers that make it.
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Lakelady, I am an 8wker too & do hope that we up those #'s. supposed to hear from my Dr. today about appeal for 1 more month. I am not having a hard time so she wants to push due to my fibroscan. She said the viral load pretreatment should not determine the lengh of tx. Have a great day today!
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SVR 12 :)
12 week Harvoni
1a
Mild to No Fibrosis
Treatment experienced x2
Thanks to everyone here for sharing your stories. It helped to get me through it all.
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Well a yahoo and a yipeee are in order for waitingforrain and grodeestok!!!
Wonderful news. I await my 4 week eot and that gives me the heeby Jeebies. Keep posting you two. Don't leave all us waiters in the lurch.
peace
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Thanks beto! I was undetected after 4 weeks in tx and I'm sure you will be too. My hats off to the Warriors who braved the earlier treatments. They are some serious fighters.
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Well by all indications, I think the news is good. After 12 weeks Harvoni and 24 weeks waiting for it, I did my last lab visit yesterday morning and the results just posted: HCV RNA UNDETECTED. My signature is now updated and complete. By happenstance I visit my IM doc on Tuesday for annual physical. I'm hoping the term "cured" comes up in our conversation.
I have been extremely lucky through treatment. I've had absolutely zero side effects. I was able to handle a rough patch at work and train for and race several bike events during and after treatment. Maybe things will change tomorrow, but for now life is good and I hope for the same for all of you.
Bob (86)
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Congratulations an that Great News Bituman.
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Congrats Bob!!! thank you for the post...inspiring. Good luck to all no matter where you are on the trail to SVR
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Way to go, Bob! You are my Saturday inspiration!
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Thanks, Beto. I'll be around. Wishing the best for you and everyone!
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Husband Roger 4 weeks EOT UD. Geno 1A treated twice before. Once Riba Interferon, second Incivek Riba Interferon.
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Hi all, I haven't posted or even been here in quite a while but, I am now 12 weeks EOT and just got the result ---- Undetectable YAY!
I started with Harvoni and one month in I was undetectable hence fast responder. But my insurance co. was threatening to allow me only three months. so My good doctor got me going on Ribavarin. INS. co. finally covered me with insistence from my nurse and a lot of hassle for the second three months so in total I received 6 months of Harvoni and 5 months combined treatment with Ribavarin.
I am very pleased with this however I am guessing based oninformation gathered that the definitive test will be three months from now!
Cheers all and good luck,
Scott
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Way o go Scott!! Nice! I was cut to 12 weeks so, you are a lucky man. Good luck to you my friend. Happy Hep free life.
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Congratulations to all on your SVR!
Let's keep up the good thoughts and prayers for those still going through :)
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Jumping the gun a bit, went in for my lab work this am, but do have some preliminary results:
1. 4wk - 12 wk EOT VL status - 7 1/2 weeks Still waiting on results
The early results, and why I'm so HOPEFUL is ALT is 30 and AST is 41. Still below the highs before treatment and within normal range.
2. Treatment duration - 8 weeks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Possible F1 based on lab work, but never diagnosed/verified by scan
6. Initial VL (date) - 2362235 (4/13/2015)
Will be able to confirm status (undetectable? ;D) in a few more days - maybe tomorrow, probably next Monday. My intuition is telling me Hep C is eradicated because every day just feels better and better.
For those still waiting, going through, or thinking about treatment - hang in there and keep fighting - the light is coming and it's SO GOOD!
Peace,
Morphin
P.S. Next item on the action list is to fight/advocate for those unable to obtain treatment due to denials/cost.
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My doctor called me today it's official I am undetected 13 weeks SVR. My viral count in the beginning was 1.5 million and geno type 1A. I had to ask my doctor I did not know. I can't help but think of the ones who still have the virus who failed the treatment and how they must feel. But I strongly feel there will be a cure for everyone soon, the light is at the end of the tunnel. No more medicine no more blood tests its all slowly sinking in to my thinking that I am cured. Hurray!
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So happy for you camper & morphin!!!! Such great people free to go ahead & dream BIG! Good luck ...we are right behind you looking forward to our day in the sun
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1. 12 wk-<15
2. tx duration-8 weeks started harvoni 3/31/15
3. tx naive
4. Genotype 1b
5. F1-F4 fibrosis status-none or mild
6. Initial VL 294,000 2/2014
will test again mid November to see if undetected.
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Hi Lisa
Was that test 12 weeks after your treatment ended?
And the mid November will that test be 24 weeks after your treatment ended?
Good luck to you
Lynn
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Yes after tx, 12 weeks. Disappointed it didn't show undetected. Mid November will be 24 weeks after tx ended. My ALT and AST are in the 20s and have been since 4 weeks (mid-tx). Hoping undetected in November. Thank you.
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After 8 weeks of treatment, my daughter is taking her last pill this morning . I hope her undetected status will stay.
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Yes after tx, 12 weeks. Disappointed it didn't show undetected. Mid November will be 24 weeks after tx ended. My ALT and AST are in the 20s and have been since 4 weeks (mid-tx). Hoping undetected in November. Thank you.
Lisa Lisa, things are still looking very good for you. Moderator Lucinda Porter, R.N. wrote a helpful article:
http://www.hepmag.com/articles/hepatitis_c_questions_2502_27873.shtml
The relevant portions:
If you are concerned that you may have some residual HCV swimming around in your body, that will someday become a full-blown infection, rest assured, as this is quite unlikely. Hep C replicates a trillion times a day, so “not detected” might as well be zero. It is extremely unlikely that a small amount of HCV will remain alive in your body without having replicated to much higher amounts. In fact, viral load tends to replicate at much higher numbers when treatment fails.
. . .
I just finished HCV treatment, but my viral load was detectable at week 8 and 12. Does this mean my chances of being cured are low?
No. In the old days, back when treatment was long and used interferon, there were clear milestones that helped us know what our chances were of permanently clearing hepatitis C. Now with new direct-acting antivirals (DAAs), things have changed. Research by the NIH Clinical Center showed that low levels of HCV RNA at the end of treatment are not predictive of treatment response among patients with hepatitis C virus treated with interferon-free regimens. (Clinical Infectious Diseases, March 2, 2015) Harvoni was used in this study, but the trend is likely to apply to all treatments using HCV DAAs.
Gnatty
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Thank you for the article. I will post my November results.
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We are all keeping our fingers crossed for you but being a strong supporter without replication at post 12 weeks, I think you have knocked the virus out. Positive thoughts sent your way!
Katie
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When I relapsed last year after treating with Sovaldi and Olysio for 12 weeks when I was tested 12 weeks after I finished my viral load was 2.4 million even though I was not detected at week 4 and at EOT 12 weeks.
Hep c doesn't sneek back it comes roaring back if it is coming back.
Fingers crossed for your 24 week test
Lynn
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Jumping the gun a bit, went in for my lab work this am, but do have some preliminary results:
1. 4wk - 12 wk EOT VL status - 7 1/2 weeks Still waiting on results
The early results, and why I'm so HOPEFUL is ALT is 30 and AST is 41. Still below the highs before treatment and within normal range.
UGH - after a LONG 5 days, my 8 week test finally came in.
UNDETECTED
(https://profoundlystrong.files.wordpress.com/2014/03/peanuts_happy_dance.jpg)
Going to go cry tears of joy now. ;D
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Morphin, Excellent News ;D ;D. Classic happy dance You posted there! Charlie & Snoopy are iconic. The waiting is the hardest part. Good luck & good health to You!
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Morphin...Sweet!
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Great news Morphin
May I join your happy dance? I just got my 24 week post results today.
SVR 24! No more hep c for me!
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Lynn...I am absolutely thrilled for you...your 24...wow...touchet
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Lynn,
Fantastic! Such wonderful news! You've been so helpful and supportive on this forum. Thank you!
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Wonderful news Lynn. So very happy for you. :)
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Got my latest results: I reached SVR12. No virus remaining in this ole bod after 40+ years of co-existing with the dang thing!!! :D
For the data compilation on this thread, I am Genotype 3a, and I got my 12 weeks of Harvoni+ribavirin through a clinical trial:
1. 12 week EOT: undetected (SVR12)
2. Treatment duration: 12 weeks (Harvoni+ribavirin), starting May 5, 2015
3. tx naive or experienced: tx naive
4. Genotype (1a or 1b): Genotype 3a
5. F1-F4 fibrosis status: F2 (April 2015)
6. Initial VL: 4 million (May 5, 2015)
And huge congrats to Lynn K & Morphin on your recent SVR-24's !
best to all,
kim
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Kim, I'm glad there's a happy ending, especially after all that you have endured.
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Congrats to Lynn K, Kim & Morphin :)
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Got my latest results: I reached SVR12. No virus remaining in this ole bod after 40+ years of co-existing with the dang thing!!! :D
For the data compilation on this thread, I am Genotype 3a, and I got my 12 weeks of Harvoni+ribavirin through a clinical trial:
1. 12 week EOT: undetected (SVR12)
2. Treatment duration: 12 weeks (Harvoni+ribavirin), starting May 5, 2015
3. tx naive or experienced: tx naive
4. Genotype (1a or 1b): Genotype 3a
5. F1-F4 fibrosis status: F2 (April 2015)
6. Initial VL: 4 million (May 5, 2015)
And huge congrats to Lynn K & Morphin on your recent SVR-24's !
best to all,
kim
Hi Kim,
A HUGE WOO HOO for reaching 12week SVR! SVR 24 weeks hooray for Lynn and Morphin!
I have been feeling great and taking care of things that got backed up during treatment.
Found out Tuesday that my anemia is gone! 12 week blood will be done next week and dr. visit with ultrasound on Nov. 9th. I will keep you posted. Even though I'm a VPak & Riba girl, I hope to join you in 12 week undetected status!
All my best, Prudence
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Congrats Kim!!!
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Thank you gnatty, concerned father, prudence, paul & all others on other threads for your good wishes!! It's pretty amazing. How many of us ever thought the cure for Hep C would be developed in our lifetimes? Not me. I'm still getting used to the New Reality of my New Life. :)
kim
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congrats kim who lives in a forest and not in Hawaii...you da bomb
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Been looking for information on post treatment with Harvoni, 12 weeks. Unable to find any real studies. This forum has provided some good information, thanks.
In a week I will do my 12 wk. blood work and on November 11th, I should find out if the virus is cleared. I will post my results than.
A little background, found out I had non-A non-B Hep back in the early 80's. Around 2002, I decided to try the (excuse spelling, to lazy to look up correct spelling), Sher-Plough, peg-Interferon and ribivian treatment for 48 weeks. I cleared the virus but relapsed. Decided to try Harvoni, finish treatment mid-August.
1b, IL28B, CT genotype
AST and ALT markers normally slightly high, for example in 2002, 42 and 45, this was before first treatment. AST and ALT markers vary over the years.
VL: 05/22/02 220 IU/ml
VL: 08/26/02 <10 this was the beginning of treatment.
VL: 12/10/02 <10
VL: 04/09/03 22500000
VL: 05/10/04 58900000
AST 161 ALT 269 11/15/2005 continue to be high but decreasing for example, 02/14/2008: AST 80 and ALT 120
Fast forward to 03/24/2015: AST 46 and ALT 72
VL: 124610 IU/ml
The fibrosis stage: could not be calculated for this patient. Testing revealed an unusually high or low value for one or more of the biochemical analytes.
Anyway over the years I have had a few needle biopsy and now a few ultrasounds, results increasing fibrosis. Latest ultrasound: "Slightly coarsened hepatic echotexture compatible with cirrhosis is again noted. No focal hepatic mass is demonstrated. Hepatic length 15cm."
Found my VL results for 6/24/2015 while on Harvoni: Undetected test limit <15 IU/mL
Let you know results when I get them.
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Hi rt2cup
Here is a link to the ION-2 clinical trial results which was 12 or 24 weeks for treatment experienced with about 20 % who have cirrhosis.
http://depts.washington.edu/hepstudy/presentations/uploads/121/ion2ledipasvirsofosbuvir.pdf
Good luck with your post treatment results
Lynn
And congrats to you too Kim!
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I have just receive my 12 week EOT results and am happy to report no detected HCV. After 45 years of living with the virus (1B) I did 8 weeks of Harvoni. I was undetected at 4 and 8 weeks (EOT), and now at 20 weeks. All my liver enzymes are well within normal ranges as well. I hope this information will provide hope for those currently undergoing treatment.
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Man, out of pocket for a day and look at all the good news flowing in!
Lynn, Happy, Happy, Happy for You ;) You are one of the most derserving of SVR after all You have been through! Excellent and CONGRATULATION ;D ;D ;D Happy Dance until You drop!!!!
Kim, Most excellent for You also! ;D Hope all is well in the forest once again! :) Be careful not to step on the little critters when Your dancing Your Happy Dance! 8) Tip Toe Through The Tulips Anyone?? ;)
2rivers , Yet another big win chalked up in the battle against evil forces! :) I feel the Earth shaking with all the Happy Dances going on around the World. Glad to hear all of this good news!!!
Waiting for the day that all posts here will be good news and SVR! Let's do it Guys!
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Kim, Most excellent for You also! ;D Hope all is well in the forest once again! :) Be careful not to step on the little critters when Your dancing Your Happy Dance! 8) Tip Toe Through The Tulips Anyone?? ;)
Haha! Will do Tommy. The little critters around here are mainly banana slugs and black bears. But I will watch out for both! ;)
kim
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2rivers,
Thanks for this news and after only 8 weeks tx. I am treatment naive but have cirrhosis and have had this virus over 40 years. I am awaiting blood work from about 3 .5 weeks EOT and I am on pins and needles. My concern was that though originally I was to get 24 weeks they reduced me to just 12 weeks, so I have been apprehensive given the years the virus has entrenched itself. You are a testimony to the potential that I too will be cured. Though having won the cirrhosis lotery, your news is very encouraging. How wonderful.
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First, Lynn K. thanks for the link. What I was really looking for is results after a year or more. For example, a person clears at the 12 wk. point. The doctor says they are cured. Are there any studies of people a year after clearing?
I see some doctors test at 24 weeks. My doctor does not seem to test after 12 weeks. I have insisted on testing after a year. I want to make sure the virus is gone.
I think this thread began to see how many people cleared or relapse after 12 wks.
I would be curious to know how many of the people who relapse were resistance to ledipasvir. I have read this could be a factor.
Are there any studies that have look at the results a year out?
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I tend to doubt it rt2 I did a little looking around and it looks like the Harvoni trials were only being done starting in just January 2013
The meds were so recently approved there are just a handful of trial participants that were treated that long ago. I don't think they are even looking at that scenario because they are saying SVR12 is 98.2% predictive on continued SVR and th eexpectation is that the primary way someone would become detected again is through reinfection not late relapse.
I suppose if it occurs there will be data gathering but the belief is cured is cured and 12 weeks is cured.
I asked to be tested at 24 weeks my doc was not originally planning on that but with my past lack of success being a 4 time treatment failure I just wanted to make sure I wasn't in the 0.2% estimated relapse after SVR12.
I really wouldn't over think this too much if you are not detected at 12 weeks post you are cured. Hard to believe as it is enjoy your freedom and new lease on life.
LK
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Lynn K. I was just wondering... If SVR12 is 98.2% predictive of a cure, wouldn't the chances of relapsing be 1.8%? You mentioned being scared of being "in the 0.2%" of late relapsers.
I am in that same boat having had previous failures and having cleared at the 12 weeks post point with Harvoni. Now I am awaiting my 24 weeks results and I'm hoping for a UND 'just to make sure'!
I've tried to get some information about late relapses with Harvoni and there is nothing out there. As is mentioned, the medicine is too new and no studies have been done to estimate those late relapsers. Also, the 98.2% predictive point might be reassessed because it was based on interferon treatments which were notorious for late relapses. We might find that late relapses are close to non-existent for Harvoni.
In any case, my feelings are that if you clear the 12 weeks post marker, you are really cured. I haven't seen anybody in this forum having a late relapse. In my case, I want the 24 weeks test just to make sure the 12 weeks test wasn't a laboratory mistake! I really want to turn the page on this disease. Good luck to everyone with their tests...
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Sorry that was a typo I meant 99.8%
I believe the stat is for Harvoni 98.5% predictive at 4 weeks SVR and 99.8% at 12 weeks
I found it before that number was quoted earlier this year maybe someone can search it out again
And anyway as you said not seeing any reports of relapse in the 24 week cohort and I think just one or two surprising relapses in the 12 week group most relapses I have seen have been the 8 week people and very few of those.
Best to all
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Good to hear it was a typo! I'll live with 99.8.... You just made my day!
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Lynn, again, thanks for the response. You seem to provide some very good information on this forum.
As you are well aware, living with Hep for decades, it is hard to believe one can get rid of this virus. I only relapsed once after doing the peginterferon/ribavirin 48 week treatment. My VL fell to less than 10 UI/ml, the lower limit of the assay. Given the discussion on this forum regarding the term undetected and viral load testing, I cleared the virus, if I have not missed something. Thus, my concern with post-12 week cured.
I go to my doctor on November 17th and will post the results. I found my test report for Harvoni, the 4 wks results, undetected.
I hope as stated on this forum this is a good indicator I have cleared this virus for good.
Again, thanks for your work on this forum and to the other moderators for their work.
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For anybody who's interested, here's the doc where the SVR predictive numbers are quoted; scroll down to the table entitled Table: Concordance of SVR4, SVR12, and SVR24:
http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf
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66 year old woman
likely infected about 16 years ago
Genotype IA
Fibrosis f2-f3
viral load prior to treatment 800,000
treatment naive
Took Harvoni for 8 weeks
EOT VL undetected
4 wk post tx VL undetected
Just got results from viral load 12 weeks post treatment. Was informed that virus was detected but was low and not quantifiable. They are going to test again in 1 month and 3 months. Has this happened to others?? I'm confused and disappointed.
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66 year old woman
likely infected about 16 years ago
Genotype IA
Fibrosis f2-f3
viral load prior to treatment 800,000
treatment naive
Took Harvoni for 8 weeks
EOT VL undetected
4 wk post tx VL undetected
Just got results from viral load 12 weeks post treatment. Was informed that virus was detected but was low and not quantifiable. They are going to test again in 1 month and 3 months. Has this happened to others?? I'm confused and disappointed.
Might very well be a miss-read. That is why if you do not have a VL count they do the test twice to confirm an active infection.
Usually there is huge jump in the virus count right away if there is a relapse post SVR 4 and is why 12 weeks without a quantifiable viral load is considered cured. This disease multiplies very fast when there is a relapse.
I am betting that you are actually clear of the virus and the test was a false positive.
All the best
Eric
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Lynn, again, thanks for the response. You seem to provide some very good information on this forum.
As you are well aware, living with Hep for decades, it is hard to believe one can get rid of this virus. I only relapsed once after doing the peginterferon/ribavirin 48 week treatment. My VL fell to less than 10 UI/ml, the lower limit of the assay. Given the discussion on this forum regarding the term undetected and viral load testing, I cleared the virus, if I have not missed something. Thus, my concern with post-12 week cured.
I go to my doctor on November 17th and will post the results. I found my test report for Harvoni, the 4 wks results, undetected.
I hope as stated on this forum this is a good indicator I have cleared this virus for good.
Again, thanks for your work on this forum and to the other moderators for their work.
Yes you would have been considered not detected at that time how long after treatment did you relapse?
It seems Harvoni is a very different treatment in that it prevents the hep c virus from replicating which is a totally different approach to viral eradication.
I also treated with Interferon and ribavirin and had no decrease in viral load in fact my viral load actually increased while on treatment.
I totally get what you mean that after all this time and for me 4 failed prior treatments including Sovaldi & Olysio where I was not detected at EOT but still relapsed that we could ever be cured but is seems these new meds do work!
As the virus comes back rapidly with relapse as mine did after sovaldi olysio it is said the majority of people who relapse will do so in the first 4 weeks so if you make it past the 4 week mark your odds are very good.
You can stay in the doubtful camp as long as you need to once you reach 12 weeks post undetected but if the virus isn't back by then it is not coming back it can't come back from the dead not even on halloween.
Have a great weekend all
Lynn
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Lynn: thanks for the reply. I figure out the difference and it is exactly what you mention. Back in 2002, with peginterferon/ribavirin treatment for 48 weeks the doctors did not say you were cured after completion of treatment even though your viral load was below the detectable level of the tests. They waited for several months and retested. In my case and many others we responded to treatment and our viral loads drop to undetected level while under the influence of the treatment. Once the elevated peginterferon/ribavirin was out of our systems the virus came roaring back.
So as I recall, at the time there were suggestions to keep using a reduced level of the treatment as a way to suppress the virus. I think it was determine this was not a successful approach. Anyway, the treatment had a number of side effects and I decided against the continue use of peginterferon/ribavirin.
November 17th is my doctor's appointment and I will find out the results. Undetectable mid-treatment and assumed undetectable 12 wks. after end of treatment. Given what has been said on this forum. I will insist on further tests, maybe 6 months and 1 year out to confirm the results. I will also push for more information on the actual state of my liver as the blood work for condition could not be calculated in my case.
Be in touch with the forum with results and to contribute to the discussion. Thanks
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Hi katel
Try not to be disappointed at this point.
I'm in agreement with Mugwump. The virus usually seems to explode back on to the scene to almost identical levels, prior to treatment, when a person relapses. Yours is more like a fizzle. If that! If it's a non-quantifiable number of less than <12 or <15 after 12 weeks EOT I would consider it noise in the test. The test might have just detected the dead virus cells left in your system. I'm leaning in the direction that you're Negative of the virus and hope you don't worry to much over it. Non-Quatifiable could just be one cell. Most of the people here are multiple relapsers and can tell you the when the virus returns, it returns with a Vegeance.
How doe's your ALT and AST levels look? Those are usually good indicators when the virus returns.
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It's funny you guys should say that because my 12 post test indicated 'undetectable' and yet my ALT and AST's are 79 and 124 respectively. I was suggested to me by my doctor and nurse to perhaps cut back on excessive physical exercise. I was training to attain a 400 Meter swim in under 13 minutes - I who had been out of shape ( meaning barley any exertion on my part ) for some 24 years. My last abdominal ultra sound shows a lesion on the surface of the liver and I go in for CT scan tomorrow. I hope it will turn up nothing. The reason I'm not having an MRI is the radiologist detected 2 bits of metal in my head.
Wish me luck, my 24 week post is around the 11th jan....
Any feedback would be appreciated please!
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I got SVR2.... I don't know whether I should be happy or still keep the lid on the cake. Am I the only one who got a 2 weeks test?
My doctor is doing 2 week, 4 week, 8 week and 12 week. I just got the SVR2 results today.
By the way, what about that ALT AST ratio? I heard a 2:1 ratio is not good. Mine is exactly 2:1 - it has been across treatment too.
ALT 12
AST 24
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I got an svr2 sickpuppy. I couldn't get to the pathology place to get my EOT tests done so had to wait till I was in Sydney which was 2 weeks post EOT. I didn't have one at 4 weeks, just thought I'd plough on to 12 weeks and see what was shaking then.
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sickpuppy, your doc does seem to test oftener than most. My hep doc is at the opposite end: week 4 during treatment, then not until the SVR 12 test. (The other labs below were what my general doc orders every 6 months). My hep doc's rationale for only testing at the major milestones is that otherwise the patient may become anxious over small changes that are actually insignificant.
You don't say what the normal ranges are for each of your labs, but ALT 12 and AST 24 sound like they're probably both in the normal range. In that case, I wonder if the ratio even matters, but if you want to formulate specific questions to ask your doc, here's a useful web page (jump to the "What does the test result mean?" section):
https://labtestsonline.org/understanding/analytes/liver-panel/tab/test
Gnatty
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I just received my 12 week EOT blood work; HCV undetected. I went through a 24 week course of Harvoni. I was undetected on treatment, 5 weeks EOT and now 12 weeks EOT. I went through 12 weeks of Solvadi/Olysio last spring (2014) and was undetected while on treatment. The virus came back and I went through an appeal process to get 24 weeks of Harvoni. I went through Peg/Riba in 2002 and had to be taken off because it was not working and was making me anemic.
I have had Hep C since 1973 and have had a black cloud following me the whole time. Please do not give up hope as there are even newer drugs in the pipeline. I wish success for anyone going through treatment. Never give up.
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Harvoni 12 weeks on Wednesday last pill/no detection will have blood work in February 2016
Had terrible headaches for 2 weeks at first and all of the other side effects. Trouble sleeping, diarrhea, unusual tiredness all are getting better. (Age 66) Also had the peg/interferon/rib in 2010 was taken off after 3 weeks platelet went too low. It's a little scare about the relapse
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Yes you would have been considered not detected at that time how long after treatment did you relapse?
It seems Harvoni is a very different treatment in that it prevents the hep c virus from replicating which is a totally different approach to viral eradication.
I also treated with Interferon and ribavirin and had no decrease in viral load in fact my viral load actually increased while on treatment.
I totally get what you mean that after all this time and for me 4 failed prior treatments including Sovaldi & Olysio where I was not detected at EOT but still relapsed that we could ever be cured but is seems these new meds do work!
As the virus comes back rapidly with relapse as mine did after sovaldi olysio it is said the majority of people who relapse will do so in the first 4 weeks so if you make it past the 4 week mark your odds are very good.
You can stay in the doubtful camp as long as you need to once you reach 12 weeks post undetected but if the virus isn't back by then it is not coming back it can't come back from the dead not even on halloween.
Have a great weekend all
Lynn
Lynn,
I have followed your posts because our situation is very similar. I also relapsed on Solvadi/Olysio (12 week course of therapy) spring 2014. Prior treat. with Peg/Riba in 2002 was unsuccessful. I just received my 12 week EOT blood work after a 24 week course of Harvoni. I can happily report the HCV is undetected just as it was all during treatment and 5 weeks EOT. This is a game changer of the highest order. I am happy you are cured as well.
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Lynn,
I have followed your posts because our situation is very similar. I also relapsed on Solvadi/Olysio (12 week course of therapy) spring 2014. Prior treat. with Peg/Riba in 2002 was unsuccessful. I just received my 12 week EOT blood work after a 24 week course of Harvoni. I can happily report the HCV is undetected just as it was all during treatment and 5 weeks EOT. This is a game changer of the highest order. I am happy you are cured as well.
Hi chino my treatment brother in arms dragon warrior!
I am so happy you have made it to SVR12 fantastic news!
Hard to believe we are cured isn't it? I find it hard to get my head rapped around the idea we are finally free!
But here it is and yes you, me, and so many others....
Yes we are free of hep c!
Congrats
Lynn
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1. 4wk - 12 wk EOT VL status
2. Treatment duration = 24 weeks
3. tx experienced = Peg/Riba (2002) failed
= Slovadi/Olysio (2014) relapsed
4. Genotype (1a)
5. F1-F4 fibrosis status (date)
6. Initial VL = +6 million (2013)
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Lynn,
It is humbling to know I no longer have a deathe sentence following me around. Never thought I would see this day.
Congrats and thanks.
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Harvoni 12 weeks on Wednesday last pill/no detection will have blood work in February 2016
Had terrible headaches for 2 weeks at first and all of the other side effects. Trouble sleeping, diarrhea, unusual tiredness all are getting better. (Age 66) Also had the peg/interferon/rib in 2010 was taken off after 3 weeks platelet went too low. It's a little scare about the relapse
Hang in there rabbit!!
The hardest part of harvoni treatment to deal with in the opinion of many here is the waiting for the magic words SVR. But consider the fact that being UND at end of treatment means you have the very best odds of being cured. If you are having a 4 week test please let us know and post the results we are all pulling for you.
I just did a 5 kilometer fast hike this very morning and I can tell you that my recovery rate is far better than it has been since I was in my late 40's! I have cirrhosis and my liver is now able to keep me energized in a way that is better than it has been in over 20 years. The myalgia and cirrhosis associated and exercise caused muscle pain is starting to completely ease off.
My thoughts are with you and WELCOME to this forum.
Eric
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Hey Chino,
The long and winding road of hep survival has a lot of forks. SVR is the promised land that we all aim for. Congrats my friend, you have certainly been through the mill. While I am dishing out clichet, the road less traveled has made the difference.
Thanks for sharing and for the encouragement you pass on.
Rabbit- Piece of cake...
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I took Harvoni for 6 months. I have just received my 3 month after treatment blood results. I am undetected but I will not say that I have beaten this disease until I am still undetected next year. I was undetected after Incivik and the disease came back so am not ready to celebrate yet. The test says it tested for virus between 15 and 25,000 per ML. That means there could still be virus present between 0 and 15. I am going to ask for another viral load test when I see the doctor in 6 months. I still have to be followed because the Hep C caused me to have cirrhosis. I guess you could add me to your success list but I am not doing a happy dance until I feel certain that I am virus free.
Nancy Dewitt
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You and me both sista, but for me at least, it is a milestone to be SVR Un-D at 12 weeks since this is the first medication to show un-detectable at all. Sovaldi had gotten me close to but was un-successful.
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From every report I have read the EOT marker for Harvoni is 12 weeks. The old EOT of 24 weeks stems from the Peg/Riba days. If you are SVR @12 weeks EOT with Harvoni, consider yourself cured. This is a hard concept to accept for those of us who have relapsed on prior treatments because we approach this closure with guarded optimism. Having lived with this insidious disease for over 40 years I had a hard time believing I could finally start living again. The longest wait was the 12 week EOT which I finally achieved. When you live with a disease this long it becomes a part of your psyche and life. It is now gone. The thoughts you once harbored and kept to yourself are no longer required. I believe this mental response is akin to the Stockholm Syndrome with regard to the disease. If you make the 12 week SVR, start living and get on with your life. You've spent too much time being subservient to this malicious disease. It's over.
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Hi nadewitt
I also treated before but I did not respond at all. I was a null responder to interferon Ribavirin
Harvoni works differently than the old treatments in that it prevents the virus from making new copies of itself so it just dies off. If the virus isn't back in 12 weeks post treatment they are calling it cured as when hep c comes back it comes full speed. There is a 99.8% correlation between SVR 12 and SVR 24 so the odds are excellent if you are not detected at 12 week you will stay that way.
I to have cirrhosis so I will be followed at least for the foreseeable future bu my hepatologist for complication of cirrhosis especially Liver cancer (HCC) as those of us with cirrhosis even with cure are at increased risk of HCC.
But several here have also found information that our liver damage may improve with time and even cirrhosis could improve. As we are cured of hep c our livers won't get any worse and might even get better.
I know it is hard to believe so give it as long as you need but we are cured!
Congrats
Lynn
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Lynn,
Thank you for your encouraging words. I did do the Ribavirin and interferon treatment and was a null responder. I also did treatment with Incivik which works in the same way as Harvoni--by making the virus unable to reproduce. I was UNDETECTED at 4 weeks and again at 13 weeks. But the virus came back. When they call it undetected because they quit counting, to me it doesn't sound like I am cured. I am more hopeful this time but still afraid it will come back again.
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Ciao all,
Got 5-6 week EOT results...Undetected! A relief every time. Early January will be the big 12. An undetected then would be a good way to start 2016. Everyone afflicted with this scourge deserves to have the experience of looking at their lab work and seeing the word undetected. Because we can. We should, every one of us make a pact to fight beyond our own cures for the millions denied or, unable to acquire the meds, until every last one reads their 24 week labs, and are able to yell at the top of their lungs "UNDETECTED".
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Beto. Happy to hear about your success with your 6 weeks test. If you relapse, you usually know in 6 weeks so, chances are excellent although I can really understand that you won't believe in it as long as you haven't been told repeatedly (SVR12, 24).
I was most interested in your rapid improvement on your fibroscan! I just had a test where I was told I dropped by half, rating of 27 cirrhosis to 13 F2? I am interested in knowing how many (most) of us will fare on the short to medium term with our fibroscan scores?
Anyway, good news all around?
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Wow Mario!
Big drop. Congrats. I had been posting about this a lot, then lo and behold my scores were remarkable as well. Remove the burden and the fibrosis reverses. I am sure that LynnK will be pleased to see your results. Her score is 25, so lower than yours. 27 is up there, so it is miraculous for you. I was F2 18 years ago. My score is lower now than it was then. This is awesome news.
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Beto. Yes, Lynn K would be a good candidate for a fibroscan test. She is one of the patients I'd be interested in. I want to see if those results are widely happening. People with F4 + would be helped tremendously in knowing their livers are improving. Tests for liver cancer and scopes in our throats would become less useful if our level of disease fall to F1-F2....
I am less interested in the patients who started with a lower level because Fibroscan is less precise at lower levels of severity.
Anyway, for the ones getting a Fibroscan, please report in here your results. We are all curious!
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Hi Beto
I don't have it in writing but if memory serves I was also 27 and I know I have had cirrhosis for at least 8 years now so of course on a personal level I would like to see that improve but also as good news for others with cirrhosis and from a scientific stand point it will be very interesting to see if I have any changes for the good.
I done see for me a reason to test until next spring give things time to happen.
Gonna do my part starting today heading to the gym and try to do something about my BMI of 29 just on the border of overweight and obese. My goal is lose 20 lbs of belly and get that far away from my liver!
1,2,3,4! Run, we gonna run, we gonna run some more!
Later
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get at that gym girl ...nice to hear you have the energy coming back.
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My 12 week post date is November 21st and I find I am reluctant to make the requested appointment with my gastro which will confirm or deny an undetected status. So far, I have only been tested by him just before treatment began, and then 3 weeks into treatment, at which time the virus was still detected (but <15). I called his office twice to ask, but was told no further tests were scheduled. By the end of treatment I just HAD to know, so I asked my primary to test me and at 9 weeks post I was undetected. So, for the past 10 weeks or so I have been mostly able to convince myself that the virus has stayed gone, but the closer I get to the 12 week post test, (which I intend to get from one doc or the other, assuming I can I work up the courage to make the appointment), the less able I am to believe it. I keep having days where I feel ill and I'm sure it has returned, but then the next day I'll feel fine. I WANT to know, but also, I don't. Thankfully, due to the people on this forum, I know I'm not alone in feeling this way, and I truly marvel at and appreciate the support and kindness that is shown here. I am so encouraged by the many undetected reports and am fervently hoping to add my name to the growing list!
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My 12 week post date is November 21st and I find I am reluctant to make the requested appointment with my gastro which will confirm or deny an undetected status. So far, I have only been tested by him just before treatment began, and then 3 weeks into treatment, at which time the virus was still detected (but <15). I called his office twice to ask, but was told no further tests were scheduled. By the end of treatment I just HAD to know, so I asked my primary to test me and at 9 weeks post I was undetected. So, for the past 10 weeks or so I have been mostly able to convince myself that the virus has stayed gone, but the closer I get to the 12 week post test, (which I intend to get from one doc or the other, assuming I can I work up the courage to make the appointment), the less able I am to believe it. I keep having days where I feel ill and I'm sure it has returned, but then the next day I'll feel fine. I WANT to know, but also, I don't. Thankfully, due to the people on this forum, I know I'm not alone in feeling this way, and I truly marvel at and appreciate the support and kindness that is shown here. I am so encouraged by the many undetected reports and am fervently hoping to add my name to the growing list!
Patience you have a weird GI to say the least. Don't be intimidated! You are UND at 9 weeks EOT and I am sure that you are going to be SVR 12! Strange that there was no EOT test called for by your GI that really is scary and I am sure is the reason why you are so unsure. Don't forget that you are the customer and that scaring the crap out of customers is not exactly a good business practice even for Doctors!
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Thanks, Mugwump. I misspoke or, rather, miswrote that I was tested at 9 weeks post. I meant to say that it was 9 weeks into treatment, (my logic being that some people are successful after only 8 weeks of treatment and if I was clear at 9 that would be a good clue that it was working for me.) Guess I still have issues with brain fog! Or, maybe it's just the 74 years that I've been on this planet taking their toll. Anyway, I have not been tested since the 9th week of treatment. No end of treatment at 12 weeks, no 4 or 8 post either. I thought that was kind of weird too, but I'm not the doc here and, in the end, the stuff either works or it doesn't. I guess I could go on thinking I am cured, which might be better than finding out I'm not, but that's not good either because I need to know if I'm still, as one orthopedic surgeon described me, "a doctor's worst nightmare", and a danger to other people. Hmmmm, that kind of makes the choice doesn't it?
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I guess you have more Patience than I have eh.. Patience. 8) I took it that you had already finished treatment and that you were only having a 9 week post treatment test, which is weird to say the least.
I did not have any extra tests between EOT, which was UND and 12 weeks post treatment so the waiting was difficult but again practical as you correctly stated. " Well. Sometimes the magic works, sometimes it doesn't!" As Chief Dan George stated in the best scene in the movie Little Big Man when he thought he was dying.
https://www.youtube.com/watch?v=QwgnDn8ez9g
Cheers
Either way the magic is that we have had the chance to see this day.
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As has been said many times on these forums, with drugs like Harvoni, on-treatment testing, and end of treatment testing bare little correlation to SVR12. Many folks with low detected results not just at the end of treatment but even afterward wind up resolving to SVR by the 12 wk post treatment marker. Because of this, EOT testing is not done by many physicians.. Patients sometimes ask for it and get it, but its kind of a moot point since the results dont mean much, and, as in cases like mine and others, cause a lot of needless anxiety. Therefore, EOT and On treatment testing is really kind of pointless. At least, thats how its looked upon by many doctors, for the reasons stated above, and elsewhere.
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. Because of this, EOT testing is not done by many physicians.. Patients sometimes ask for it and get it, but its kind of a moot point since the results dont mean much, and, as in cases like mine and others, cause a lot of needless anxiety. Therefore, EOT and On treatment testing is really kind of pointless. At least, thats how its looked upon by many doctors, for the reasons stated above, and elsewhere.
Perhaps the EOT is necessary for only one reason, to determine if the individual has a resistant strain or undetected co-infect and the virus has started to multiply again. So those who are on Harvoni and other NS5B inhibitors without having testing done for resistant strains of HCV prior to treatment can be certain that their treatment was not in vain sooner rather than later on post treatment.
I know that is why the 4 week test during treatment is so important because to date very few people are being tested for resistance prior to treatment. Let us not forget that this treatment is quite new and the methods and possible resistance testing is still being done by many based upon older less effective treatments. I am sure that the treatment regime will become more standardized as more people get treatment and a better understanding of the post treatment side effects and possible downsides for some people will become better understood. I would not be at all surprised if some insurance companies start to insist upon testing for viral resistance to the drugs prior to approval! I am sure that they will see this as a possible cost saving measure if the viral resistance testing is a cheap way to avoid paying for something as expensive as Harvoni.
It seems that most specialists are not calling for testing for resistance to the inhibitors and instead rely upon the VL testing during treatment to determine the efficacy of the treatment. Let us not forget that the resistant strain is rare statistically so testing for it might or might not become part of the standard treatment practices prior to commencement of the regime.
Cheers
Eric
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To contribute to the forum which I have found helpful understanding the virus.
I got my 12 week post treatment results today and I remain undetected. I will go back in 24 weeks as a follow-up. I fully expect the results will be the same. Around 2003, I relapsed after the 48 week peg-interferon alfa-2B and ribavirin treatment. During that treatment my viral load dropped to undetected while taking the meds. On post treatment follow-up my viral load came roaring back. So given the experience of others on this forum who have reached the 24 week period and remained undetected, I fully expect this will be my experience.
As for the AST and ALT discussion, my current AST level is 74 and my ALT level is 40. Again based on my past experience these markers do not correspond to VL levels on a 1 to 1 basis. During past treatment I had the following pattern:
04/2001 before start of treatment: VL >2 million UL/ml ALT: 89 AST: 69
03/2002 after I began treatment: VL 220, ALT: 45 AST: 42
08/2002 during treatment: VL <10 ALT: 18 AST: 27
04/2003 after end of treatment: VL 22,500,000 ALT: 51 AST: 42
10/2003 just bloodwork ALT: 31 AST: 32
05/2004 VL 58,900,000 ALT: 30 AST: 32
Years later:
08/2012 VL 166090 ALT: 49 AST: 47
10/2013 VL 96150 ALT: 66 AST: 47
03/2015 VL 124610 ALT: 72 AST: 46
11/2015 VL undetected ALT: 40 AST: 74
Looking over these markers, I assume at the 24 week period both my ALT and AST levels should fall within normal range unless there is another health problem related to these markers. I expect the viral load to be undetected. ALT and AST are indicators of underlying health problems not always associated with just HEP C.
For example: my alpha 2 macroglobulin level was very high back in April 2015, this marker indicates possible cirrhosis or diabetes. It is also an indicator of hephrotic syndrome and a few other things. All I am saying is the ALT and AST are only markers of possible problems but not the be all and end all of determining a particular problem, hep c virus.
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rt2cup,
First off congrats on 12 week EOT. That is wonderful news. The liver enzymes can indeed be affected by many other factors and too many to name. I am sure you and your doc are looking into everything. You may want to ask him about your ferritin/Iron. I just know that for me and others that I have compared notes with, my enzymes were always higher when ferritin was. Of course, the tx seems to lower that factor. Some folks have discovered that a multiple vitamin they had been taking raised their iron.
Anyway, there are so many possibilities. You are probably correct that they will recede over time. I wish you good luck on that. Also, we are all different chemistry sets.
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Oh...BTW my 4 week (actually 5.5 week) EOT was undetected. Put that in your post results Bucko. :)
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4 week Post Treatment: UNDETECTED!!! :) I'm stoked and optimistic!
(Actually text was done at 6 weeks but I'm reporting it so it can be listed somewhere in the tabulations, either at 4 weeks or 6 weeks, whatever is better.)
I called Gilead to see if there are any stats for 6 weeks post and the nurse said the only testing they are reporting is 12 weeks after EOT.
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rt2cup,
First off congrats on 12 week EOT. That is wonderful news. The liver enzymes can indeed be affected by many other factors and too many to name. I am sure you and your doc are looking into everything. You may want to ask him about your ferritin/Iron. I just know that for me and others that I have compared notes with, my enzymes were always higher when ferritin was. Of course, the tx seems to lower that factor. Some folks have discovered that a multiple vitamin they had been taking raised their iron.
Anyway, there are so many possibilities. You are probably correct that they will recede over time. I wish you good luck on that. Also, we are all different chemistry sets.
Thanks for the suggestion about ferritin/iron, I will look into it. As for my 4 wk. results, a quick look through my records I cannot find it, but I am sure I stated in a previous post the 4 wk. results were undetected.
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Thanks for the suggestion about ferritin/iron, I will look into it. As for my 4 wk. results, a quick look through my records I cannot find it, but I am sure I stated in a previous post the 4 wk. results were undetected.
Hi Rt2cup. Not all doctors test at 4 weeks EOT. Mine normally only test at EOT and 24 weeks, but I told him I need 12 weeks EOT as that is now being called cured. He appeased me.
I had a battery of blood work from my internist and asked her to test VL as well due to some scary physical things. That's why I got 6 week post test. So glad I did... it helps me emotionally!
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Bree, I'm delighted to hear your good news. -Gnatty
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Bree, I'm delighted to hear your good news. -Gnatty
Thanks Gnatty!!! I'm so happy! Still stunned about this possibility of a cure.... it is truly amazing!
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Hi Rt2cup. Not all doctors test at 4 weeks EOT. Mine normally only test at EOT and 24 weeks, but I told him I need 12 weeks EOT as that is now being called cured. He appeased me.
I had a battery of blood work from my internist and asked her to test VL as well due to some scary physical things. That's why I got 6 week post test. So glad I did... it helps me emotionally!
Glad to hear your good news....I did have a 4 wk. test which was undetected, I just could not find it for the post. I got my post treatment 12 wk. test which I posted earlier today and I am still undetected. So far, what has been stated on this thread about the VL test has held true. It seems with Harvoni if you are undetected during the treatment you have a very high chance of remaining undetected post treatment.
Hope the best for you.
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yeah Bree
6 week club yo
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I am gratefully undetected at 3 months post Harvoni
1. 12 wk EOT VL status ~ undetected
2. Treatment duration ~ 8 weeks
3. tx ~ naive
4. Genotype 1a
5. F1 fibrosis status ~ liver biopsy October 2014
6. Initial VL ~ under 1 mil. October 2014
I had hep C for at least 17 years before it was discovered via blood test ordered by my PCP (because of high-risk prior life choices). I am scheduled to take my 6 month post tx on December 30th, hoping for a new year "cured". Has anyone been told that they will still need to be checked periodically for the rest of their lives for liver cancer? I was told this by me PCP.
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Isnt that more of an issue for cirrhotic patients?
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Congratulations on your SVR12, hkillinger. That's already considered a Harvoni cure by many doctors. Since you're not anywhere close to F4, I'm surprised you've been told you need periodic checks for liver cancer. Your PCP sounds medically conservative.
Gnatty
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the liver cancer risks are reduced greatly after cure. If you were f-1 before treatment, odds are you could be f-0 now, or will be. Many folks are reporting great drops in liver scores, even ones that were scored into F4. I am one of those. If the virus is cleared from you body and your enzymes and liver scores put you in the F0/F1...I do not imagine your chances of hepatic carcinoma are any worse than the average Joe. If I am wrong, someone chime in, please.
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Hello Everyone!
I wanted to check in and let everyone know that I got my 12 wk post tx labs back yesterday and have achieved SVR12!!
It was pretty amazing to hear the words and have my doctor hug me. Got to call my 87 yr old mama and my 85 yr old dad and tell them that they are stuck with me for many more years. I have the relief of knowing that I will be here for my disabled son for many more years and will get to watch my grandson grow up.
I will pray that the blessings that I have received will be passed on to all who come after me that they may receive the gift of health - HCV Free!!!
1. 12 wk EOT VL status ~ undetected
2. Treatment duration ~ 8 weeks
3. tx ~ naive
4. Genotype 1a
5. F1 fibrosis status
6. Initial VL ~ 468,000
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So happy for you Redbird.
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Congratulations Redbird on your SVR12! That's wonderful news. :)
kim
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Congratulations! So good to hear, Redbird. Thanks for giving a Nervous Nellie like me hope and confidence!
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redbird...this is wonderful news indeed. Good luck moving forward.
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Yea! Congratulations Redbird!!! Another cure... I love it! 8)
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Fantastic news Redbird! Congratulations!
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Hi All,
I have been lurking for the last few months during my husband’s treatment. This forum has been a great support for me. Time to post some positive results.
He has achieved SVR12. We are sooo happy this day has finally come.
He had no noticeable side effects. He was somewhat tired but had other medical issues that could have been a contributing factor. He was given a low dose of ribavirin due to low hemoglobin and kidney function at start of treatment. He now feels great and has more energy than he has felt in years.
I wish the best outcomes for all on this journey. Harvoni is truly a life saver.
1995 Dx Hep C chirrosis
1997 liver transplant
Geno 1A
Treatment naïve
Start 12 weeks Harvoni & Riba 200mg 5/2015
VL 124587
4/2015 biopsy fibrosis stage 1
AST 80 ALT 183
EOT VL <15 Undetected 8/2015
EOT SVR12 VL <15 Undected 11/2015
AST 18 ALT 21
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Hi All,
I have been lurking for the last few months during my husband’s treatment. This forum has been a great support for me. Time to post some positive results.
He has achieved SVR12. We are sooo happy this day has finally come.
He had no noticeable side effects. He was somewhat tired but had other medical issues that could have been a contributing factor. He was given a low dose of ribavirin due to low hemoglobin and kidney function at start of treatment. He now feels great and has more energy than he has felt in years.
I wish the best outcomes for all on this journey. Harvoni is truly a life saver.
1995 Dx Hep C chirrosis
1997 liver transplant
Geno 1A
Treatment naïve
Start 12 weeks Harvoni & Riba 200mg 5/2015
VL 124587
4/2015 biopsy fibrosis stage 1
AST 80 ALT 183
EOT VL <15 Undetected 8/2015
EOT SVR12 VL <15 Undected 11/2015
AST 18 ALT 21
Thank you for sharing that beautiful story. You sound like a very supportive partner. Congratulations to you both! Enjoy yourselves! I'm a Harvoni fan as well....
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Well almost everyone seems to be getting similar results except me. I was a quick responder to harvoni being un-detected at four weeks, EOT un-detected, and 12 weeks post un-detected but this is where my numbers don't follow. My doctor is baffled because @ 12 EOT my ALT is 79 and my AST 114.
So my question is : has anyone else had this result? Looking at medical profiles mine matches LynnK's history all the way down to this point,, heck we are even the same age!
If I have already posted this information I apologize, but I am only re-posting because no-one has commented as yet...
Sincerely,
Scott
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I will assume you are still UND. My opinion is that if your AST levels remain high after the cure, you might still have a liver disease caused by something else. Fatty liver might be one? At least you got rid of a known problem and you can now focus on the rest of your health. There is supposed to be 20 % of the population suffering from Fatty Liver disease to some degree. It just makes sense to have some of us being afflicted with Fatty Livers!
Also, your alt levels might be slower to come down than the average person so being retested later on might bring you relief..
I don't know much about being tested for fatty liver disease but you might want to discuss it with your doctor.. Good luck to you!
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hey Scott,
I am sure your doc is looking into everything. What mario said about fatty liver of course. I always mention ferritin because of my own experience. From my experience and from what I have noted on lots of discourses with folks with liver disease, liver enzymes seem to be a bit of a barometer for high iron. High iron ferritin is common with fibrosis and cirrhosis as well as other liver afflictions. Middle aged and older men seem to have high iron stores, as well as post menopausal women. Folks with hep do not give blood (which is the best way to lower it). Just a thought. Your doc has likely already checked that. I will say though, Harvoni seems to lower it. So, maybe it equalizes after SVR.
perhaps your immune system is a bit hyper also. Lastly, make sure there is nothing in your environment that might be toxic. It could be that they will just come down on their own, Sorry this is happening to you. Good luck.
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Just got the good news today: SVR4!
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Just got the good news today: SVR4!
Congrats
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sickpuppy, I'm VERY glad to hear your excellent news. You have had to deal with so much at such an early age that it is wonderful that your liver no longer has the HCV burden.
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Mario and beto thank you! My doctor is very thorough and maybe that's why he did not seem overly happy when we reached SVR 12 in my case.
He is reserved to a fault. Never tells me much in fact he tells me as little as possible, it seems everything is a secret. My thoughts on that, well I am the one who should be told everything he knows ---- am I right LOL ?!
@Mario I looked up fatty liver, I don't have any of the supposed causes, I don't drink alcohol, I consume less sodium than the supposed daily intake, I try to avoid sugar and fat. I barely eat red meat anymore, I stick to fish, eggs , and chicken. I do however have one of the symptoms being I feel a little swollen just below the liver when I eat too much. A separate liver disease may have been what has been preventing the efficacy of the hepC treatments all these years.
@Beto so ferratin? and you say people with hep don't give blood well to that I agree so i'm deriving that a good ole fashioned blood letting may help! wow sometimes the old cures are still the best ones, but we all know they used to perform that op when they were out of GOOD ideas.
Keep 'em coming guys I thank you for your consideration and taking the time to reply.
I'll know more in January which will be the EOT 24 blood test.
Had I mentioned also that last may I suffered an almost complete hepatic arrest, man I nearly died so I am happy to be here at all. They wanted to give me a liver transplant at that time, but Sovaldi with ribavirin and interferon, though it didn't cure me, must have broken down the Hep to a degree, that and the fact that was the first time my under-sharing doc was the first time he told me to change my diet and cut out the salt, sugar and fat. I had told him in 2009 following a failed peg interferon ribavirin treatment and that my stools had suddenly become pale, I think right then he should have made me change my diet, but all he said was that it may be un-related.
All I can say is thank you God and thank you science for creating harvoni in the nick of time!
Now for sickpuppy: I am really happy for you to have gotten the news you needed to hear. I was in that same awful position from July to October waiting to find out. hang in there budd, my EOT 24 isstill six weeks away....
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High liver enzymes sometimes indicate health issues other than liver. I would retest as sometimes the lab gives false results and the numbers naturally can fluctuate. Were your other labs all good? If they didn't do a complete panel you might want to do that too.
Good luck to you!
Katie
I just read your last post and see your liver is probably compromised with everything you've been through so it may just take time for the healing to begin showing up. I would still retest.
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Scott, as others have mentioned there are several factors that can influence high liver enzymes. I would ask your doctor what are the factors that can create this kind of scenario. I have found that I have to make a list of direct questions and ask my specialist...generally he doesn't volunteer information. Much of what I need to know I learned on the forum or through other research.
I also have a "secret doctor"... I have had to find out the answers I need on my own with research. He is very smart, he knows his stuff, but he's often not helpful and not communicative and defensive when he feels cornered. We don't want to burn bridges, but we do deserve answers. I'm always doing a delicate dance with him in that regard. It's a shame really, because other than being a "means to an end" for me, we could have been great friends and allies and enjoyed the journey. Thank goodness he has an awesome nurse and I have an excellent internist.
That's so great on your SVR 12!!! Whatever the case, that will really help your health and your liver! Wishing you the best... Bree
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Hi Scott. You have probably considered and read about this possibility. But extreme physical exercise can increase ALT & AST in an otherwise healthy person. Some years ago when I was doing some very intensive martial arts training and physical conditioning work, my liver enzymes increased noticeably. Neither my doc nor I knew why. It was later that I read about correlation between extreme exercise and liver enzymes.
This may not be the cause in your case. But it is useful to know that there can be many reasons why liver enzymes can be high. And some of them aren't really bad reasons. My intense martial arts training period was one of the healthiest periods in my life.
kim
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Hi Scott
Kim is right working out.
Have you been doing any intense workouts lately? Or doing anything that can strain your muscles? I "think" a high protien intake can can liver enzymes to elevate as well. From what I read, your ALT level is just 1 point over the upper limit of <78 and your AST is 3x higher than normal at 114 with the limit being <35. Usually the ALT is higher than the AST. But in your case it's the opposite. I would think that if the virus was back your ALT would be higher than your AST.
How does the rest of your hepatic panel look? If you were negative at 12 weeks EOT I wouldn't think that would change and you're most likely still Negative!!! You might want to look at other posibiliies.
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Yea healthy puppy!!!
Wow scott...nick of time no kidding. I had forgot about the exercise thing and yes, have also heard that other organ(like the heart) can cause elevations.
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Thanks everyone ! Actually my nurse had told me about the possibility of strenuous exercise, so I have cut back. I just want to be in the best shape possible.
I have never had a very strong cardio vascular shape and in the last three months I have come to the semi professional scuba level of DiveMaster. During that course I had to be able to swim 412 yards free style swim and anything over 14 minutes was a fail. There were other tests so I was swimming as fast as I could for about a month and a half three times a week. I passed! nuff said!
except to ask the question has anyone ever heard of a serious diver being damaged by scuba diving and the pressures involved?
I will include a pic of my latest liver sheet below. Well scratch that it won't let me.
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Scott, I had a friend, married to a Commercial Diver for shellfish here in Alaska. He had lots of severe issues with his sinuses... it was physically noticeable as his forehead would swell up...very painful and ended up having a heart attack at an early age. (was it related...we don't know) Another friend who is also in the same line of work has started having the same sinus issues. I think the pressure damages the sinuses with continuous diving so I would check on it.
Katie
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Hi Scott
What were your alt AST levels like before treatment and how advanced is your cirrhosis?
Any way everyone had a lot of good ideas I found this article at American Family Physicians Causes and Evaluation of Mildly Elevated Liver Transaminase Levels
http://www.aafp.org/afp/2011/1101/p1003.html
Lots of causes for elevated ALT & AST
My labs (LabCorp) lists reference ranges for ALT as less than 33 and AST as 0-40 different labs have different ranges
Hope they figure it out soon for you!
Hi WELLpuppy congrats on your SVR4
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my dear lynnK, my ast alt was somewhere high in the 150 to 180 zone pre-treatment, and as for the way they calculate my nurse said they usually see #'s in the 20 to 30 range. Mine never went below 40 to 60 range albeit I was un-detected. The only thing I know to tell you about my fibrosis/cirrhosis is I was in the F4 range and am considered to have cirrhosis. The transplant Dr. says if I clear the disease there is a chance some of my liver will regenerate, enough to keep me alive and out from under the knife with little or no meds to keep me going., My gastroenterologist just says he doesn't know.
I have a photo of my most recent test screen but so far either I do not have the right to post an attachment or I can't figure out how to....
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11 weeks EOT
Undetected
24 weeks Harvoni + Ribavirin
Initial VL: 1.5MM
Failed Sovaldi + rbv last year
F1 fibrosis but all liver counts within range
Nicest doc at Mt Sinai manhattan
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Congrats HerrJoel!!! 8)
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Good luck to you too.
After failing sovaldi last year in cautiously optimistic
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Hi Scott
Hummm mine were like ALT 78 and AST 54 prior to treatment and went into normal range on treatment. In July at my 12 week post they were ALT 29 AST 27.
I am also F4 cirrhosis for 8 years now all I know is my liver may or may not get better but it shouldn't get worse unless I get liver cancer which I will be monitored for for the rest of my life probably.
Since I have compensated cirrhosis as MELD 8 and Child score "A" I am not eligible for transplant and likely should never need one unless like I said I develop liver cancer but even HCC is now at decreased risk with cure.
Another way to look at it is if you are not eligible to be on the transplant list now because you are not sick enough to need a transplant you with cure you never will be.
The future is so bright I gotta wear shades! 8)
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Cool lynn thank you!
I had logged 42 dives in my lifetime since starting in 2006 until this summer, but so far this year I have logged 82 new dives without issue. Those dives were pre, during and after treatment. I was getting swollen pockets under my eyes but that was over two years ago and has seemingly gone away. I am however getting little spider web veins on my back, chest and shoulders, I wish they would go away too!
According to you and all I'm reading I should be walking on sunshine. But I am still cautious since last year I developed abdominal edema. But the good news is my stools have finally gone to a normal color. It took forever it seemed but now it is more often normal than not.
Like you I shall be followed all my life for this and the one thing my doc did stress was the fact I can never eat salty food and should avoid sugar and fat as much as possible.
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Hey Scott, It sounds as if you are doing good, just watch the diving as the friends I mentioned dived for decades so it may be cumulative. I am sure the depth and water temperature would be important too. Hope you figure out what's going on with your liver enzymes but I congratulate you on your SVR12 and I wish you Happy Diving!
Katie
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Thanks Katie, I am not a commercial diver however so I think that puts luck a little more on my side. I do a dive it generally lasts less than one hour, I always make my safety stops we shall see what we see when we see it!
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You know scott, sometimes with healing comes oddities and crisis of varying kinds. These new drugs create a situation of mind bogglingly rapid healing. Our biggest health injury culprit (Hep C) is suddenly arrested. The change in stool color is a very good sign.
In my case, if the scans were not a fluke (you never can be sure) I went from f4 to f0/f1. I was at a solid f2 17 years ago. Even if the numbers are a little off, my healing has been rapid. Folks have mentioned to me, 'you must be feeling great,' and I have to say "well, not really." The virus is dead (hope it stays that way) but the body still has to heal. Some things that the virus did over decades to our organs and systems will take a long time to right the wrong. Also, we are all different as to how quickly or livers heal. I think you are going to notice some amazing changes and I bet those liver numbers come down on thir own. It may be that yours run a little high. Time will tell and time will heal.
I will probably get the award for speculation, but I guess that is how I roll. I hope my posts aren't too cheeky...but hey this is a free forum...I am impressed with your diving. We all must keep on keeping on.
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Hello Everyone
I'm here to make my 24 week EOT contribution to the stats page. I've had them for a couple days now but wanted to make sure another person, I know here, had good news as well. After hearing or reading their ALT result and feeling confident they're negative as well, I've decided to post my results.
Anyway
GLCII
1.Post EOT status – SVR4, SVR12, SVR24 Undetected ;D
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - experienced 3x prior
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL (2/14/14) – 12043488
7. ALT 19
8. AST 15
It sure has been a long ride and I'm glad it's finally over with.
I think 2016 is going to be the year of the cure for all those of us that have failed this treatment. With the success of Harvoni this year, I just don't see how 2016 couldn't be the year to end of Hep C altogether.
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GLCII, CONGRATULATIONS on your SVR24, and KUDOS for waiting for another person's good news before posting. You are a class act!
Gnatty
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Excellent news GLC!!! Thanks for the inspiration
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Hello Everyone
I'm here to make my 24 week EOT contribution to the stats page. I've had them for a couple days now but wanted to make sure another person, I know here, had good news as well. After hearing or reading their ALT result and feeling confident they're negative as well, I've decided to post my results.
Anyway
GLCII
1.Post EOT status – SVR4, SVR12, SVR24 Undetected ;D
2. Treatment duration - 12 weeks Harvoni
3. tx naive or experienced - experienced 3x prior
4. Genotype (1a or 1b) – 1a
5. F1-F4 fibrosis status (date) – F2/F3
6. Initial VL (2/14/14) – 12043488
7. ALT 19
8. AST 15
It sure has been a long ride and I'm glad it's finally over with.
I think 2016 is going to be the year of the cure for all those of us that have failed this treatment. With the success of Harvoni this year, I just don't see how 2016 couldn't be the year to end of Hep C altogether.
I am so happy for you :)
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GLCII - Congratulations to you!!! It's so awesome to weather previous attempts and then to get cured, makes it all the sweeter!!! Enjoy yourself in 2016 (and before too;) 8)
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Thanks Everyone.
I just hope everyone else that's treating can come here and post SVR results. It's kind of hard to post good news when there's people posting that didn't make SVR.
Gnatty
When that person get's their final result, in a couple days, they will be here to post it. I hope! :o
Thanks for the kuddo's. Though I do know some people that would disagree. :o ;D From all the posts I've read of yours, you're the Class Act!!! ;) Also, Good Luck on your upcoming test.
Beto
I saw where you knocked out your 6 week EOT with an SVR. When january gets here, I have no doubt that you will knock the 12 week EOT out with an SVR as well. After that the 24 week EOT test is just a technical formality.
concerned father
Good Luck to you and your daughter!!! I'm pulling for her, you and your family. I have no doubt she will prevail seeing that she is young and outside of the virus, which is gone now, healthy & strong. I read where you said she had more energy and that's a good sign by itself. If nothing else, she has what most of don't have on her side, youth. That and the harvoni is going to go a long way.
Bree
Congratulations on your 4 week SVR. I see in your Sig it says 6 week undetected! Wow, your almost home yourself. Looks like you and Beto will be crossing the finish line about the same time. I have no doubt you're both going to clear this virus or should I say have cleared?!
Good Luck to all of you. :)
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Yes, GLCII, there's a little group of us that all finished treatment within days or a few weeks of each other. We all supported each other during treatment and are in some level of waiting for after treatment results. Everyone that I know of in our group so far is UND. Most are quiet at the moment, dealing with whatever comes up for them right after treatment... and/or... waiting for 4, 8 or 12 week results. And, different doctors test at different times.
A few of us have had easier rides, a few of us have had some sides to deal with. All I know is that I have a special place in my heart for this group of supporters and kindred spirits! They have all helped me tremendously in their own unique ways. I'm feeling optimistic and holding that SVR space for us all!
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I feel bad that I wasn't here during the treatment phase as I didn't know that this site exists.
I want to crosspost what I posted in a different thread and wish you all good luck!
Hey guys, just wanted to share the doctors official "cured" email.
I still cannot believe it's true and the hypochondriac in me is imagining all kinds of trouble.
I hope it'll settle in after a while!
I do feel great post-treatment. Appetite that I've never experienced before, energy, focus and just general well-being.
I am wealthy enough that I was able to afford to pay for both Sovaldi and Harvoni in the same year and I want to pass on this miracle after I get 24 Weeks SVR.
I would love to sponsor at least 12 weeks of someone who is not fortunate enough to afford it. http://imgur.com/lX1bwMe
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Herrjoel- That is one of the kindest things I have heard in my lifetime. I wish for you and whomever is on the receiving end the absolute best.
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Joel, Congratulations and I just want to say we need more people like you in this unsettled world. Thank you for your compassion.
I am doing a Happy Dance for all of the new SVR's that have beat this Alien Virus Monster!
Have a wonderful Thanksgiving! ;D
Katie
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Herrjoel... that's amazing giving back! I was considering this 30 days challenge to do every day for 30 days:
1. Do something nice for yourself (self-care, healthcare, etc.)
2. Do something for your personal community (friends, family, etc.)
3. Do something for the world community.
I'm not quite sure what I could do for the world community every single day, I guess even re-cycling or smiling at a stranger or projecting peace could be a few things. A nice note or to somehow show appreciation and gratitude to a friend or family every day would be a personal community thing. And, self care, always a good thing. Hey, maybe I can do this!
Anyway, your gift is amazing! Thank you for helping someone who needs it. I'm sorry, I am very curious but I didn't open the link as I'm always scared to open links.
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Herrjoel, it's definitely not too late to feel a full part of this wonderful community. There are always Newbies posting who are scared, unsure, or having side effects. If you have time to read one or two posts that have 0 replies and make those people feel a little less lonely, it does wonders. Also, occasionally our wonderful RN moderator Lucinda Porter posts a request for more people to write up their journey. Here's the latest such post: http://forums.hepmag.com/index.php?topic=3580.0
Thanks to the fill-in form, it's easy to do (I've done it). While Lucinda prefers that people use their actual name, a pseudonym is okay, too.
Gnatty
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Herrjoel, I don't know if you saw my response to your generous offer that you also posted on another thread. As I said there, it sounds like an amazing offer, but we have to be careful on the Forum, it can become uncomfortable when money is exchanged. I can see so many potential complications that can arise. May I suggest that instead of making an individual offer, you work with the Patient Advocate Foundation http://www.patientadvocate.org/ or Patient Access Network http://www.panfoundation.org/ or the Bonnie Morgan Foundation for Hep C http://www.notwithoutafight.org/. Agencies such as these have ways to make money go a lot further since they can negotiate with pharma, etc. Plus you would get a tax deduction.
As for those inclined to accept an offer such as this, please tread carefully. We can't verify these offers, and we need to be hyper-aware of scams and other deals that seem "too good to be true." Contact the links listed above if you need help getting medication.
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Thank you for your suggestion!
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Posted here at 4 weeks EOT. Just received 12 week labs,they only did a viral load and I am happy to report that at 12 weeks post I am still undetected...Praise the Lord...its looking good for a cure. I know Gilead says 12 SVR is a cure,but my Dr will not until undetected for a year. Just cant help but feel good about it!
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yes, indeedy, pjggibson -- it is looking GREAT for a cure -- CONGRATULATIONS, and Happy Thanksgiving!
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Posted here at 4 weeks EOT. Just received 12 week labs,they only did a viral load and I am happy to report that at 12 weeks post I am still undetected...Praise the Lord...its looking good for a cure. I know Gilead says 12 SVR is a cure,but my Dr will not until undetected for a year. Just cant help but feel good about it!
Congrats piggibison!!!! My doctor calls 24 weeks cured.... I'm going with Gilead's 12 weeks guidelines but will do 24 weeks too just because. I have about 4 weeks until I can check for 12 weeks but things are looking good so far!
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Just got lab results for 14 week post EOT. I had to wait for RNA to come back, but when I saw the ALT 11 AST 21 posted a few days earlier, I really began to believe that the virus might be gone. This morning it was confirmed as UNDETECTED! I love the growing numbers of success stories and there is every reason to hope that those who don't clear this time will not have long to wait before they do. I don't see my Gastro guy until next month, so I don't know if there will be further testing or not, but in my own mind I am thinking that now I can bleed anywhere and no one will have run for the Clorox bottle to douse me and my surroundings. What a relief! :) :) :)(somehow the rest of this got deleted, but the gist of it was .... I am so thankful to the people on this forum for their support and helpful information and I'm hoping that this topic will continue to be full of similar posts!
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Great news congrats.
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Patience, I hope your wonderful news won't keep you from posting in the future. (Some people leave the Hep Forums behind when they leave HCV behind). I have always enjoyed your posts and felt that you chose the perfect avatar to match that gentle humor that is often peeking through your words.
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Thanks for the wonderful news patience
Your success is chalking up encouragement for the rest of us EOTers in waiting :). Rock on!!!
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CONGRATS PATIENCE!! Wonderful news. :D
kim
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I had my last appointment with the infectious disease department at the VA clinic yesterday. They said I graduated and they dismissed me I am cured. I too mentioned that my thoughts are clearer now and they said they have had several other patients say the same thing no more brain fog or at least not near as much. I am so thankful my prayers have been answered. Happy Camper!
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Fantastic, Camper! This is a day of good news on this thread. :)
kim
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Patience and Camper, CONGRATS!!! So wonderful and encouraging for all of us!
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Thanks to all for good wishes and, Gnatty, I will hang around the forum because it feels so good to watch the victors come marching in! I don't want to miss anyone's best day ever! Glad you like my 'selfie'. :D
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1. 4wk UND
2. 24 WEEKS HARVONI
3. Treatment experienced (interferon)
4. Genotype 1a
5. F1-F4 fibrosis status (date) F4 March 2015
6. Initial VL (date) March 2015
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More good news - more and more each day. So exciting!
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Hi Debula
Congrats on the not detected 4 weeks post. I see in your signiture you were diagnosed with HCC so sorry to see that.
Are you on the transplant list what is your MELD? I have heard you get extra points to move you up with having HCC.
Sending all my best wishes to you
Lynn
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Hi Lynn and thanks for your post
I don't know my score but they were talking about resection because the tumor is ina good location but since then I had more scans and one of them shows lesions on my lungs sooooo tomorrow is lung biopsy day and hopefully (crossing fingers and toes) that the lung lesions are not cancer. If they are then I don't know what wll happen next since the surgery and transplant will be out of the question. :(
I will post again once I have the biopsy results
Hopefully I can report back with better news
Blessings to all
Deb
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Debula, I'm glad the Hep C is not in the way for you right now... we are all pulling for you, sending you good vibes and wishing you all the best results!!!! Bree
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Good luck tomorrow Deb with your biopsy! Hoping for good news for you. :)
kim
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The feeling hopeful was rewarded with my results I got today svr12!
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The feeling hopeful was rewarded with my results I got today svr12!
Yes it is an exciting time and you deserve to reward yourself and the ones you love. Just do something nice that you would not normally do for yourself and the ones you love for no reason. For some of us there is survivors remorse and we need to be thankful in a meaningful way, regardless of how a small a change it may be, it is important to find a new way of thinking and acting about ourselves.
For some of us HCV effected our self esteem and sense of self worth, I know it did me, especially when I was first diagnosed. Then thinking of myself as a walking biohazard also became a slow downward spiral as the disease slowly degraded my body. It also degraded my spirit and faith in humanity to some extent and at times made me reclusive and suspicious for no good reason.
All the best in your life without HCV!
eric
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Very good lakelady I hope to get there someday soon
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Great news! Love to hear it!
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So much god news here, but my heart is sad about Deb's latest trial. Deb, when you get the results, and if you are OK with this idea, we could start a separate thread so we can support you better. You have supported many here, and I don't want your issues to get lot in this thread.
Hugs,
Lucinda
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Debula, I missed your news in the flurry of other postings. Please let us know how everything is going if you can. Great suggestion above from Lucinda.
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The feeling hopeful was rewarded with my results I got today svr12!
Congrats lakelady!!! That's awesome!
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I am going to start with what people have posted on this board already.
Paleface
1. 12 wk post EOT VL status - Undetected
2. Treatment duration - 12 weeks
3. tx naive or experienced - TX experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1-F2
6. Initial VL (date) - 5.7 mil
12 week undetected
Naive
Genotype 1 a
F4 fibrosis
Initial 12mil vl
JillLynn
1. 12 wk post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2
6. Initial VL (date) - 1.5 mil
Lukey
1. 6 wk psot EOT VL status - Detected VL of 782,040 (Relapse)
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown
6. Initial VL (date) - 5.7 mil
PaulG
1. 12 wk post EOT VL status - Detected (Relapse)
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Unknown (F3 12 years ago)
6. Initial VL (date) - 2.5 mil
Dragonslayer
1. 11 wk post EOT VL status - Undetected
2. Treatment duration - 8 wks
3. tx naive or experienced - Tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2013)
6. Initial VL (date) - 2.4 mil
Mm
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2-F3
6. Initial VL (date) - 6 mil
Nicole_1234
1. 6 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - 0.65 mil
Mikee
1. 8 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - unknown
4. Genotype (1a or 1b) - unknown
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
Kate0b1
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
Katie
1. 8 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - no cirrhosis
6. Initial VL (date) - 2.6 mil
Islandgirl
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1b
5. F1-F4 fibrosis status (date) - unknown
6. Initial VL (date) - unknown
JoeK9999
1. 12 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F0-F1 (2012)
6. Initial VL (date) - 3.8 mil
Long_Haul
1. 4 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F4 (2000)
6. Initial VL (date) - NA
terih
1. 3 wk Post EOT VL status - Detected 414,111 - (Relapse)
2. Treatment duration - 12 wks
3. tx naive or experienced - tx naive
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F2-F3 (11/2014)
6. Initial VL (date) - 2.56 mil (11/2014)
marv777
1. 12 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F1
6. Initial VL (date) - 6 mil
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By y'all
It was nice knowing you and thanks for the memories.
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Hi Sheltonmj
I am guessing you have completed your treatment and ar still virus free at some weeks past your last pill is that correct?
Could you add a comment like the ones you copied with your info
Congrats and good luck
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By y'all
It was nice knowing you and thanks for the memories.
I do not think that the thread has been hijacked beyond all common sense Sheltonmj. To my way of thinking at least it is very hard for some to discuss only pure statistics. Perhaps this thread has become more important to encourage the individuals who do not succeed in reaching SVR with Harvoni to have faith that even better treatment is just around the corner.
Statistics can get in the way of gentle objective discourse and frequently do in today's twitter like world. I am sure that there are also some statisticians who use comparison software who are following the thread who know how to use simple command line comparison interfaces like grep.
All the best in your life free from HCV.
Eric
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Yeah don't mind me I am just a numbers freak I just like to see those numbers
Most important thing you are hep c free congrats
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Well Lynn I was working on that while you posted so for those who use an Ipad and cell phones here is a post that will help find the core results of this thread. The links are to the stellar work that BIXTER did to clarify the work of CHARLY8 and the results after those monumental pieces of information.
I am sure I may have missed someone who posted SVR but no one to date has been in the unfortunate category of the low percentile who relapsed after reaching SVR 4.
So far what we are seeing is that SVR 4 is highly predictive of SVR 12 which means the EOT viral test is not a the best indicator of treatment success or failure.
The first test during treatment to determine the efficacy of the drug is very import and can make a difference to treatment duration and drug regime decision making including adding in other medications
Restricting some people who might need longer treatment to 8 weeks of Harvoni treatment needs to seriously be reconsidered by all concerned. We are clearly seeing statistically that initial viral load is a poor indicator of the potential efficacy of short treatment duration.
The clinical judgement that an initial viral load <6 million has anything to do with treatment duration decisions needs to be re-examined, because we are clearly seeing failures due to treatment duration not initial viral load levels.
To help those who are new to this thread and want to look at the statistical results that this thread was intended to generate here are links to what Bixter compiled about the results. Yes there are more treatment failures than were reported in the clinical trials and we need to keep this thread open for this very reason alone.
Firstly the 8 week treatment success stats
http://forums.hepmag.com/index.php?topic=2665.msg29738#msg29738 (http://forums.hepmag.com/index.php?topic=2665.msg29738#msg29738)
Secondly the 12 week results
http://forums.hepmag.com/index.php?topic=2665.msg29744#msg29744 (http://forums.hepmag.com/index.php?topic=2665.msg29744#msg29744)
Thirdly the 24 weeks of treatment results
http://forums.hepmag.com/index.php?topic=2665.msg29748#msg29748 (http://forums.hepmag.com/index.php?topic=2665.msg29748#msg29748)
there were no relapses for those who had other treatment durations, one at 21 weeks of pills the one who started on S and O for 8 weeks and swithed to Harvoni for 20 weeks and cleared the virus to SVR cured
Since bixter's compilation there have been no reported relapses for those who were on treatment and waiting to post to the thread. Let us all hope that in the future those who failed treatment can come back and increase the numbers of joyful posts on this great thread!
1 sabre 12wks tx svr12
2 pl1952 12wks tx svr12
3 concernedfather 8wks or 12tx? svr4
4 lakelaky 8wks tx svr4-12
5 morphin 8wks tx svr8
6 2rivers ?wks tx svr12
7 sickpuppy 12wks tx svr2,4
8 nadewitt 24wks tx svr12
9 beto 12wks tx svr6
10 patience 12wks tx svr14
11 rtcup ?wks tx svr12
12 bree 12wks tx svr6
13 hkillinger99 8wks tx svr12
14 redbird29 8wks tx svr12
15 survivorhcv 12wks tx svr12 (transplant recipient)
16 herrjoel 24wks tx svr11
17 pjgggibson ?wks tx svr12
18 debula 24wks tx svr4
19 juan81 SVR 70 weeks so treatment for him was well over a year ago. (study group? perhaps)
20 sheltonmj SVR 5 tx duration?
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Thanks for the recap I counted SVR's just by numbers there I see 114 people plus the 18 you just added 136 people who are now cured amazing times!
Ok missed a couple 2 more for 138 not to mention all those who haven't posted
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I do not think that the thread has been hijacked beyond all common sense Sheltonmj. . . .
Eric, I wonder if you misunderstood what Sheltonmj meant by "By y'all It was nice knowing you and thanks for the memories." Given what he had just posted to the "What does being free from HCV change in our daily lives?" thread, he might only have been saying that, after having had an extremely debilitating case of HCV, he is now living a real life for the first time in ages, so he won't be spending time posting to the forums. If that's what he meant, then he was letting us know he had a successful treatment before he signed off for good. Here's the end of his post on that other thread:
I am 5 weeks Eot
Virus is undetectable.
All labs are normal.
My doctor says she and her other doctors have not had one relapse.
So I'm good.
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Thanks to everyone who has supplied data to this thread. Congratulations to all the SVRs. Being a data geek, I usually refrain from posting congratulations here because it does make it harder to mine the data (Mugwump, thanks for catching us up), but I understand that others would find it unnatural not to post congratulations here. Debula, I'm saddened that you have more to deal with.
Nerdy Gnatty
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Eric, I wonder if you misunderstood what Sheltonmj meant by "By y'all It was nice knowing you and thanks for the memories." Given what he had just posted to the "What does being free from HCV change in our daily lives?" thread, he might only have been saying that, after having had an extremely debilitating case of HCV, he is now living a real life for the first time in ages, so he won't be spending time posting to the forums. If that's what he meant, then he was letting us know he had a successful treatment before he signed off for good. Here's the end of his post on that other thread:
I am 5 weeks Eot
Virus is undetectable.
All labs are normal.
My doctor says she and her other doctors have not had one relapse.
So I'm good.
Gnatty I did reply but it took me some time and if it seems that my post here was a bit of a shot gun blast that was not at all my intention. I hope that he does fine dealing with the natural feeling of discomfort we can experience when we are elated and at the same time conflicted inside.
I know that re posting links to the data scares those who are still waiting for SVR 12 and cured.
What I was trying to get across is that the data we are seeing is correlating well with SVR 4 being the most important milestone for 99% of those who are treated and that Gilead was not irresponsible and did not somehow fudge that data. I hope that this starts to ease the fears of relapse for some of us who are born worry warts, self included. ;)
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>>The clinical judgement that an initial viral load <6 million has anything to do with treatment duration decisions needs to be re-examined, because we are clearly seeing failures due to treatment duration not initial viral load levels. <<
Mug, Id be wary of using the 'stats' posted on this forum as criteria for summarily tossing out the viral load linkage to treatment duration.... These numbers, while interesting to look at and helpful for comparison are completely uncontrolled coming from too small a sample to be used, in my opinion, to draw such a conclusion. However, if you have study data that points to the advisability of abandoning such linkage please post a link.. Thanks much..
BTW, reached SVR 48 this week. I guess it really is gone.. Hard to believe sometimes, isnt it... !
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Mug, Id be wary of using the 'stats' posted on this forum as criteria for summarily tossing out the viral load linkage to treatment duration.
Yes dragon I understand the importance of not jumping to conclusions to ditch a procedure which is considered standard practice. What is not making sense however is why some who have low levels of free mature virus in the blood are not clearing the virus on shorter treatments. Clearly the clinical studies were not broad enough and the treatment guidelines are not final. I would hesitate to conclude that there are a great many more gt1a out there who have a drug resistant strain of HCV, because the clinical trials were not that small and did not exclude or search out to exclude those who had resistance.
All the clinical studies that I read about were not based ruling out of the study group individuals who had sub-strains of genotype one a and included all groups except those who have kidney failure.
I truly hope that as mike and others have stated that what we saw with lower numbers of successes at the beginning of this thread was an anomaly and was the result of many who clear the virus not bothering to post the fact that they cleared the virus.
I am sorry I just don't like it when insurance companies and governments for that matter can hire doctorscomeaccountantscomelawyer monsters to make clinical decisions that might be not in the best interest of their clients or citizens and that is a bottom line!
Eric
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So much god news here, but my heart is sad about Deb's latest trial. Deb, when you get the results, and if you are OK with this idea, we could start a separate thread so we can support you better. You have supported many here, and I don't want your issues to get lot in this thread.
Hugs,
Lucinda
Thank you Lucinda and to all of you for always being here with just the right words.
They didn't do the lung biopsy after all. They got me all ready, IV in place and all, and the attending physician said he didn't want to do it because the lesions are too small. They have rescheduled me for Dec 31st with another doctor. I am scared. Why is it OK for another doctor to do it if the first one thinks it's too risky? Anyway I have to get it done so we can know how to proceed with the liver mass. So tired of all this waiting. :/
Congrats to the newest SVR12 peeps I am hoping to say that I am SVR12 at the end of the month too
Blessings to all
Deb
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Deb,
Sometimes medical decisions seem arbitrary, and I suspect your doc can answer your questions. As for waiting, that is one of the hardest things. Grace Campbell and I have both blogged on it. Make peace with waiting and you will have a powerful tool.
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i wanted to say im going on my 22nd day of harvoni 12/16/15,on dec21st will be my 4week blood test,because of holidays, i wont get the results via phone til dec29th,im on the 8week harvoni regiment,im 63yrs,tx naive,starting vl 200,000 diagnosed in 98
im 1B,starting ast=23 after 2weeks ast 16,starting alt26 after 2weeks 15,doc says dont be upset if you are not undectable @4weeks,she's had 4weekers undectable&
at the end of 8weeks detectable,so i will post on dec29th my results,srry for posting
early just had to post its hard waiting for that first 4week vl,told doc i feel like im not even taking anything cause no side effects,she says thats what i want to hear,and to stay positive,now after posting i feel better will post29th so I'LL BE BACK
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Hi terminator
On treatment results mean little even at end of treatment we had a couple of people here who were weakly detectable. So like your doctor said don't worry about your on treatment results.
The one that counts is the SVR12 (sustained virological rsponse) at 12 weeks post treatment. Many doctors are calling that cured while the 4 week post SVR4 test is about 98.5% correlation with SVR 12. So if you make SVR 4 in mid February that will be a good sign you are likely cured.
Good luck
Hasta la vista!
Lynn
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6/15/2013 (Treatment Naive)
ALT= 50
AST = 49
HCV Detected
8 week Harvoni TX Started 6/2/2015
4 week 6/30/15
ALT= 20
AST= 27
HCV Detected
8 week Harvoni Result 7/28/2015
ALT= 25
AST = 27
HCV Not Detected
12/3/2015 Result
ALT = 19
AST = 24
HCV Not Detected
Thanks to all of you! A true source of inspiration for me during my Harvoni TX journey.
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This is my first time in a forum, so please have patience. I'm not very computer adept either.
This is the 1st day off of 12 wks of Harvoni txm. As of Dec 7th my Doc office called to tell me that I was Hep C virus free. (Hep C, Geno type 1a) I am 68 yrs old and have had this for apox 40 plus yrs.
Last week I developed a U.T.I. which I get chronically @ every mo or 2 for aprox 6 yrs. (yes, I have been to a urologist many times during and have had many procedures done to no avail...having been hospitalized on two occasions for Pseudomonas & Urostasis with no answers).
Now I am feeling worse than I did while on the Harvoni. Headaches have increased, fatigue increased with stomach upset & accidents and now some depression also.
My PCP ref'd me to another Urologist and said that "the Harvoni has weakened my immune system more then it was already", and gave me Rocephin inj 200 mg + 2 times (antibiotic)....which seems to have cleared up.
My next appt with my Gastro-Ent is Dec 5th. They will give me another Lab/ Blood work slip then they will do blood work every 6 mos I was told.
The nurse said she "Has had no complaints from any patient on Harvoni other then mild headaches". Anyone else having bad side effects post Harvoni trmt?
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Hi DLK, and welcome to the forums! And congrats on being free of Hep C!
Sorry to hear about your post-treatment problems. A number of us on these forums have had similar experiences - feeling worse post-treatment than we ever did during treatment or prior to treatment. All I can tell you is that, whatever the reason for this 'post-treatment syndrome' as I have begun calling it, it does disappear with time. I am pretty much back to normal, but it took me nearly 5 months post-treatment.
There are several threads going here where people are discussing this situation. Here is one of them:
http://forums.hepmag.com/index.php?topic=2053.0
Consult your doctor, of course. But to the extent that your post-treatment problems are just the body readjusting to civilian life post-Harvoni and post-HCV, it takes the time it takes. That differs for everyone. But the problems do eventually resolve.
best,
kim
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Hi all,
I received mother's results for 24wk SVR. The result is confused me. They sent it in IE/ML. But I know international unit for detection Hep C RNA is IU/ML
Mother's result is 1500 IE/ML. Please help me. They wrote in notes section : " kein Nachweis" (German language)
Please help with interpretation of the result.
She was undetected EOT and SVR12.
Thanks
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Hi
I did find
"Internationale Einheit (Abkürzung IE oder I.E.; englisch international unit,IU"
So IE/ml is IU/ml the other phrase " kein Nachweis" per google translate means "no proof"
But it probably would help if you entered everything you are reading to get a better idea what is going on I am sure someone here could translate the whole thing but right now we are lacking the context of what you have given so far.
Is there a way to contact her doctor for clairification what it all means?
Best to you both
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In German it means not detected or no evidence
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Yes but a little bit concerned about the 1500 IE/mL not knowing the context could be similar to the standard note about the lower limit being 15 IU/mL just a different scale. I really don't know what that means without the full text and I don't want to jump to any conclusions
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Yes but a little bit concerned about the 1500 IE/mL not knowing the context could be similar to the standard note about the lower limit being 15 IU/mL just a different scale. I really don't know what that means without the full text and I don't want to jump to any conclusions
Can I send you personally mother's results? Our doctor in Germany is also confused. He said he encounters this kind of document first time, as well.
If you give me your email address, I can send it.
Thanks
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I would prefer you discuss this with your doctor. if he cannot answer can he contact other doctor who can? One would think test result answers should be understood by your doctor is he a liver specialist? I would be concerned about how good my doctor is if he cannot understand a test result he has requested be performed.
Are you saying he has never seen a viral load test result?
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The laboratory which produced the result may be a source of further information for your doctor. For example, when I have the HCV RNA by PCR (viral load) test done at my regular doctor's lab, it is sent on to a laboratory called Quest Diagnostics which has a web site with a full explanation of what the results mean.
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I would prefer you discuss this with your doctor. if he cannot answer can he contact other doctor who can? One would think test result answers should be understood by your doctor is he a liver specialist? I would be concerned about how good my doctor is if he cannot understand a test result he has requested be performed.
Are you saying he has never seen a viral load test result?
He is good doctor. I ain't saying he has never seen a viral load test result. He says this report form is not usual. And we have to do blood test in a different clinic. He is not confident regarding this test results.
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Hi
Your doctor really needs to answer this for you. We are mostly lay persons here, patients who have been dealing with hep c, hep c medications, and the consequences of hep c for decades so we have picked up information along the way and try to help as best as we can.
I spent some years in Germany when I was in the service but I am not fluent. Maybe you could take your copy to a professional translator if you are not comfortable posting here. I was just hoping we might have a native German speaker here who could help you to interpreter your result.
I did find a reference in German that may help someone who speaks German
http://www.med4you.at/laborbefunde/lbef_hepatitis_c.htm
I am neither a medical professional or fluent in the German language. Basically I can order a pizza and a soda and ask a cab driver to take me somewhere.
Best of luck to you
Lynn
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Thanks Lynn,
I am so grateful you and all fighters with Hep C here.
Actually, we have to doctors, one in my country, the other one in Germany. This morning we met with local doctor. She suggested to do one more PCR in different laboratory. We did it and they sent blood work to Turkey. So we have to wait for results another 10 days. Then doctor suggested to do Fibroscan and blood work (ALT and AST). According fibroscan mother's result is 14.2 (F4>10). Tomorrow I will meet with doctor and we will discuss all results of analysis.
Hope after 10 days we will receive good PCR results.
Honestly, I am so tired. I have been supporting mother in fight with with Hep C more than 8 years. During this period Hep C virus always has won the battle. Harvoni is our hope, otherwise, we have to wait long for a new medicine.
By the way, mother is so depressed. I have never seen such hopeless eyes:(((((
Good luck all of us.
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I hope you get better news soon
My best to you and your family
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I hope you get better news soon
My best to you and your family
THANKS!!!
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I imagine it will be a long ten days waiting for the next blood tests to return. Best wishes to you and you mother,
Hazel
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1. 12 WK POST EOT 12/21/15 UNDETECTED / SVR 12
2. Treatment duration - 12 weeks (began 7/6/15)
3. tx experienced
4. Genotype 1a
5. F1-F2 fibrosis status (3/6/15)
6. Initial VL: 13,538,733 (2/26/15)
7. CURED!!! 8) 12/21/15
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Wow, Bree, 13,538,733 HCV evildoers gone, GONE, GONE -- CONGRATULATIONS!
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yea Bree!!!!!!told you...piece o cake. Gnatty and Tommy next. I forgot to post my 12EOT Undetected of this official thread.
So...I was undetected and 4 weeks and at 12 weeks Post...got that thread meister?
Bree party at your place...don't back down :)
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Merry Christmas Bree!
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Thank you all so much. This forum group is amazing!
And, I won't back down for sure... I really mean it, let's meet here in Hawaii, 2016!
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Great news Bree, good work!
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Hello My friends, as this forum truly was instrumental in my journey . I was approved for the Harvoni and delayed it for 6 months . I researched my own medical status ,genotype and the information I gathered here before I filled my script as I turned down interferon treatment for 15 years. I was non A non B in 1982 when I became sick .So I was aware of this since age 21 .
]HERE ARE MY STATS 6 weeks EOT undetected so far!!! *8 weeks harvoni tx naïve,
[/b][/color] 1a /cc
f0-f1
necro a2-3
vl 1million undetected after 3 weeks sept22 2015 & 6weeks ontx,Oct 22,2015
ast 90 50 in 2004 NOW 23 lowest since im 21
alt 100 49 in 2004 NOW 21 lowest
]So 6 weeks EOT and another 6^ weeks to go!!
has anyone's kidney bun test elevate?? mine did just 3 numbers out of normal range which I never ever had...In addition my body did change I cant tolerate sugar or I get palpitations which I never had.. so far
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Hi, lin44 -- congrats on the great stats. My bun elevated during Tx, but only a tad. My serum creatinine went up more. Both were already abnormally high pre-Tx due to a different illness that damaged my kidneys. Since your bun is just 3 numbers above normal range, you should be just fine. And once Tx is over, the Harvoni clears out quickly: its half life is a little less than 2 days. If your doc isn't already planning to include a bun test in the labs you'll take at 12 weeks EOT, you could ask to have it included.
Gnatty
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Great news on your test results! As far as sugar you are the first one that I remember mentioning that. I know it has been mentioned to be careful not to consume much sugar especially refined sugar and other unnatural sugars. But as far as after Harvoni treatment being more sensitive to sugar that is new. After 21 weeks of my taking Harvoni I was a little sick from the side effects felling very tired but thankfully now I am feeling much better. And with sugar I am still careful not to have much in that it will make me feel sick. You maybe right I just did not notice it maybe others noticed it and have not mentioned it. I hope others will reply to your question because I know sugar can be a problem.
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In addition my body did change I cant tolerate sugar or I get palpitations which I never had.. so far
My taste sensitivity to both sweet and salty became hypersensitive during Harvoni treatment, and to such a degree that I couldn't eat fruit because it tasted disgustingly sweet. Normally I am a voracious fruit-eater - my favorite foods. Other than fruit I don't normally eat anything sweet. I never add sugar to anything.
kim
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Ditto Kim,
Hyper sweet sensitivity. For me also astringent components in food would sometimes leap to the forefront of my taste sense. I had a fresh veggie juice once and I was convinced that someone poured nutrasweet into it. Now I know what the deal was. Harvoni is a great drug that does some strange things while curing us.
I also believe that after treatment we a changed somehow. I truly believe (speculation) that it has more to do with our bodies no longer having to compensate for the consistant assaults of the virus and all of the metabolic changes it had created.
Harvoni itself may have some lasting consequences, however, it clears immediately from tissue...or so we are told. My physician, and others I have heard, believe that the onset of antibodies causes higher total protein counts and possibly general autoimmune inflammation.
We will know in time I suppose. I will say, though now rarely, the taste weirdness pops up from time to time. Before I began treatment I had read posts by folks EOT that claimed that they had good days and bad ones with the bad getting fewer with time. Sounds like regulation to me. I digress again...
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1. 12 week treatment Harvoni
2. Treatment naive
3. Genotype 1a
4. Fibrosis F0-F1, waiting for insurance (Blue Cross Blue Shield) for almost a year, increased to F1-F2 in nine months.
5. Last pill Dec. 16, 2015
6. Initial viral load 2.4 million Sept. 2014
7. Undetectable at 4, 8 and 12 weeks (under the umbrella of Harvoni)
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Hi all
I don't know about any of that re food sensitivities.
I eat pizza, Big Macs, and been known to have an occasional glazed donut.
The only thing I don't do is drink alcohol as I can't anymore because of my cirrhosis and I quit smoking in 2001.
I have never felt particularly bad except I have heartburn a lot due to a hiatal hernia but that's it
Just for a different perspective
Hope you all feel better
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Congrats on you on treatment results Alexa now you just need to wait and come back to post your post treatment SVR4 and SVR12 results.
Congrats on finishing treatment and wishing you SVR next year
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Thanks. Amazing how many folks are reluctant to report the serious side effects with these combo drugs. So many side effects were experienced but not reported (by Gilead) as being caused by their drugs. A very insightful ER director enlightened me as to why pharmaceutical companies neglect to report the rather serious side effects caused by their drugs.
Shame on everyone pretending this is simply a rare occurrence. It doesn't seem to be. Let's just hope it's temporary.
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Congrats on you on treatment results Alexa now you just need to wait and come back to post your post treatment SVR4 and SVR12 results.
Congrats on finishing treatment and wishing you SVR next year
Thanks, Lynn. I've read many of your posts and think you are amazing.
Yes, undetectable 4, 8, and 12 but just spent three days in the hospital due to debilitating side effects from Harvoni. Hope it's worth it.
“Undetectable” does not mean “cured.” An undetectable viral load means that so few copies of the virus are present in the blood that today's monitoring tests are unable to detect them.
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Hope you are feeling better sorry to hear you were hospitalized that's rough wow!
Yes on treatment testing means nothing relative to being cured.
However continued not detected 12 weeks post treatment (SVR12) is considered by the majority of the medical profession as evidence of viral eradication and thus cured. Some doctors prefer to hold to the old standard of SVR 24 but none the less as the virus if present multiplies at such a high rate if any viable virus were remaining below detectable levels (LLOQ) at EOT they will quickly replicate and be detectable. This is why the majority of relapse occur by week 4 post and that SVR4 correlates at 98.5% with SVR 12 and SVR12 is 99.8 % likely cured.
We had a couple of people here who were weakly detected at EOT but when tested at 4 and 12 weeks post they were not detected we are guessing they may of had some either virus pieces that were detected or some not viable dying virus that could not reproduce. But for whatever the reason they are now called cured by their doctors.
I have a friend who successfully treated with the old meds decades age. With the arrival of these new treatments his doctor decided to check to see if he was still virus free just in case. He tested still free of hep c.
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Just to add on the prescribing information sheet that comes with every prescription there is information how to report side effects and I encourage everyone evperiencing sides to contact them. There is a number for the FDA as well as Giliead so if you prefer you can contact the FDA directly they do want to hear from you.
There were few sides on clinical trial but that may not hold as meds get out to the general public and more people are treated. But it doesn't matter to you as an individual if you are the one experiencing the effect.
Here is the link and info:
https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI were fatigue, headache and asthenia (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Just to add even if you experience a change in you health while taking any medicine it may or may not indicate causation. It could be coincidental and not related it may have occured even if you were not taking anything.
Best to all in the new year
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Very informative info Lynn, thank you.
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1. 12 wk EOT VL not detected (12/23/15)
2. Treatment duration: 12 weeks
3. Tx naive
4. Genotype 1a
5. Fibrosis status F4 FibroScan (05/13/15) F2 FibroSure (05/15/15)
6. Initial VL 9,490,582 (03/20/15) 2,934,934 (05/15/15)
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Beauty congrats :)
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Yea Gnatty!!! I'm thrilled for you! We have more forum friends who will be joining us soon. :)
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Fantastic!!! Gnatty I have been waiting for this. How wonderful.
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Fabulous news, Gnatty! CONGRATS ! :D :D :D
kim
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The gnatcatcher triumphs over the bad bugs!!
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Congrats Gnatty what a great Christmas present for you!
Please remember to come back and add your after treatment SVR4 or SVR12 results when you get them.
Happy New year!
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Gnatty and Bree I missed your news as I've been in transit. Congratulations on your results! So happy for you both. Brava!
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Gnatty and Bree I missed your news as I've been in transit. Congratulations on your results! So happy for you both. Brava!
Thanks so much Philly!!! Hope you are enjoying your trip :)
Lynn, I think that was Gnatty's 12 week post SVR results.
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Thanks, jakas, Bree, beto, Kim, patience, Lynn, and Philly. Extra thanks, Bree, for clarifying things for Lynn. (Yes, Lynn, this was 12 weeks >EOT, my only >EOT #s.)
It was interesting how the CNP's office handled things. On 12/24, 30 results including the ALT and AST were released to the patient portal, but not the VL, which I assumed just wasn't ready yet. What puzzled me was that each panel was missing one or more results that I knew from past lab sessions belonged in those panels. Today 10 more results including the VL were released to the portal, and I saw that the 9 that had been missing from the various panels were the ones that are out of range (the earlier 30 were all in range). Now in my case, I'm used to these 9 being out of range, but wasn't it clever of the CNP to disclose only the good stuff before a major holiday/long weekend?
I'm still waiting for the Alpha Fetoprotein Serum result. My AFP had been climbing steadily over the years (from 2.6 to 5.3, where <6.1 is normal), but it dropped to 4.6 when I was 4/5 through treatment. I can't tell if the lack of a result posting is because it's not ready or because the CNP or the hepatologist wants to talk about it (cue the ominous music). I'll know soon enough.
Happy New Year, everybody.
Gnatty
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Oops my bad I missed in your signature your finished Harvoni date in September duh
I guess the 12 week EOT threw me off. I guess I was expecting 12 week post EOT
Sorry for my confusion and congrats again welcome to the land of the hep c FREE!
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Oops my bad I missed in your signature your finished Harvoni date in September duh
I guess the 12 week EOT threw me off. I guess I was expecting 12 week post EOT
Sorry for my confusion and congrats again welcome to the land of the hep c FREE!
It is confusing as that's what it says to copy and paste... it says 12 week
EOT instead of 12 week post EOT... I think it is confusing to others too.
Maybe we should edit the format?
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I looked back at some of the posts even on his second post when he was commenting on some of the early reports he used both methods 12 week EOT and 12 week post EOT just to add to my confusion lol.
About your AFP test,
one of my old AFP results before any recent treatment back in Aug 2013 was 26.6 (0.0-8.3 normal) and it was around that number until I treated.
It was 13.4 at my EOT test and was 10.4 at my 24 week post treatment test so it is getting closer to normal range.
I am sure yours will be fine to especially as yours were always in normal range.
Happy New Years toast with sparkling cider to all
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Bree, I had copied the template from charly8's initial post. We can't edit that initial post, and it may be too late to eliminate the problem anyway, since this thread has nearly a thousand replies and we can't guess who will copy from the original post versus who will copy from someone's reply closer to the end of the thread.
Lynn, thanks for all your real-world AFP data. My mid-November ultrasound was fine (actually, all of them have been fine). Glad I won't have to research HCC just now -- I'm busy "culling the herd" of my weaker nature photographs before I make the end-of-year archival backup.
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Bree, I had copied the template from charly8's initial post. We can't edit that initial post, and it may be too late to eliminate the problem anyway, since this thread has nearly a thousand replies and we can't guess who will copy from the original post versus who will copy from someone's reply closer to the end of the thread.
Lynn, thanks for all your real-world AFP data. My mid-November ultrasound was fine (actually, all of them have been fine). Glad I won't have to research HCC just now -- I'm busy "culling the herd" of my weaker nature photographs before I make the end-of-year archival backup.
Gnatty, Yes, I copied mine from the beginning and just went back and edited it to "post EOT". No worries, we all headed to the same goal... SVR.
Your photos must be amazing. I love beautiful photography. (not my skill set, for sure)
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Fwiw in Sept 2015 my AFP was 56 and change. In Feb just before I started treatment it was 76 and change. At 12 weeks post eot it was 8 with my lab having a normal range of between 0-7.
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Wow, Philly -- thanks! That's right up there with Lucinda's ALT of over 18,000:
http://forums.hepmag.com/index.php?topic=3615.msg34207#msg34207
Bree you're probably envisioning landscape photography, living as you do where it's of the knock-your-socks-off* variety. Things are on a much smaller scale around here, so I'm on the lookout for those moments when the ordinary reveals the extraordinary. It's quite the treasure hunt, and even on days when I come home empty-handed, I've felt nature's healing presence and gotten some exercise (not only walking but also the isometrics involved in repeatedly hoisting heavy gear in case the bird opens its beak or the bee chooses a particularly graceful blossom).
*not that you're likely to be wearing socks in Hawaii ;)
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I have reached SVR12
Doing happy dance!
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Congrats Debula :)
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Debula, it's great to see you're finally free of HCV.
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Congratulations Debula :)
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I'm so happy for you Debula!!! Hip Hip Hooray!
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BIG OL' TEXAS SALUTE TO GNATTY AND DEBULA ON SVR12. Just getting caught up from X-mas. HAPPY,HAPPY,HAPPY for You guys! :) ;) ;D
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1. 12 week treatment Harvoni
2. Treatment naive
3. Genotype 1a
4. Fibrosis F0-F1, waiting for insurance (Blue Cross Blue Shield) for almost a year, increased to F1-F2 in nine months.
5. Last pill Dec. 16, 2015
6. Initial viral load 2.4 million Sept. 2014
7. Undetectable at 4, 8 and 12 weeks (under the umbrella of Harvoni)
Sorry. This is not the information requested. Unsure how to delete this post.
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No worries Alexa congrats on finishing treatment!
Just come back later and post your updates if you like
Happy New Year
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Harvoni 12 wk tx
TX NAIEVE
Genotype 1a
fibroscan 1-2(2008)
initial VL 166,000
4 weeks EOT UNDETECTED
12 weeks EOT UNDETECTED
beyond words is all I can really say about my experience/end results from harvoni!!
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Harvoni 12 wk tx
TX NAIEVE
Genotype 1a
fibroscan 1-2(2008)
initial VL 166,000
4 weeks EOT UNDETECTED
12 weeks EOT UNDETECTED
beyond words is all I can really say about my experience/end results from harvoni!!
Congrats Jiff! And, I agree with you... beyond words too! :)
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Awesome Bree!!!! Almost surreal to me even though I got my 12 week EOT results 11/17/2015,feels like a dream come true and my own little slice of heaven!!! Congratulations on your results!!!!!! I'm so struggling with insomnia but I don't think I can attribute it to anything harvoni related.....any word on possible long term effects of harvoni tx?????
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Hard to have much in the way of long term data as no one has taken Harvoni very far in the past.
I assume even the first patients who took Harvoni in clinical trials were only in the last few years The earliest reference I found to ledipasvir and sovaldi in the electron clinical trial was from March 2013.
So as far as long term effects I expect we pioneers will be the first to know if there is anything to worry about.
But for folks like me with cirrhosis I was beginning to be doubtful I would still be alive in 5 years without these new meds so I am not worried about any post treatment effects other than being able to grow old and die from something other than liver disease.
Best to all dragon slayers
Lynn
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I most likely was infected with Hep C when I was 18 my Doctor told me life expectancy with the virus is 15 years in a undeveloped country and 30 years in a developed country. I am 61 years old now so every year I lived past 48 years old I was thankful. At times I wasn't sure if I would live much longer but the years went by and survived long enough for a cure to be found. My prayers have been answered and long term side effects I don't think about much. Just thankful to be alive and that I feel better than I did.
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I just got the news! I'm SVR12! WOHOOOOO!
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Allright, another dragon bites the dust. Great news! 8) 8) Here is to Your increased good health and a Happy Liver! ;) :D ;D :)
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Congratulations!
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Huge congrats to all you SVR12'ers!!! ;D
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Another one bites the dust!
Fantastic news congrats!
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My daughter is going for her 12 week EOT blood test tomorrow. She was undetected at 4 weeks during treatment and I hope it remains the same. We will know in 10 days, we have our fingers crossed.
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Best to you and your daughter! Keep us posted.
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I just wanted to check in and let everyone know that I still have SRV 9 months after EOT!
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Good to hear -- thanks and congratulations!
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Thanks Ruthie,
Such great news...gives us all even more hope. How are you feeling?
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Thanks for posting, Ruthie. Extra hope always needed and appreciated!!! :)
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Honestly, I am so tired. I have been supporting mother in fight with with Hep C more than 8 years. During this period Hep C virus always has won the battle. Harvoni is our hope, otherwise, we have to wait long for a new medicine.
By the way, mother is so depressed. I have never seen such hopeless eyes:(((((
Good luck all of us.
Hi Cute,
I am wondering how you are, it's hard being a carer sometimes,
Hazel
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Hi all - haven't posted for ages, just checked in and seeing some undetected results - woohoo! (Saw yours Else - haha, way to go!). I was undetected at EOT week 4 and just had my EOT 12 (but it's more like 13 1/2) bloods drawn today. The hep doc said that week 4 is the important one, because 98% of people who are undetected then will remain undetected. He said of 300 patients he's treated with Harvoni, only 1 has relapsed.
He also said that insurance is now covering earlier stages of fibrosis but I don't know how true that is.
Good luck for 2016, everyone!
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Hi, BDK -- good to hear from you again. Your numbers are looking mighty fine.
Yes, it's newly true for 2 major insurers -- see this thread:
http://forums.hepmag.com/index.php?topic=3797.0
Gnatty
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Hi all - haven't posted for ages, just checked in and seeing some undetected results - woohoo! (Saw yours Else - haha, way to go!). I was undetected at EOT week 4 and just had my EOT 12 (but it's more like 13 1/2) bloods drawn today. The hep doc said that week 4 is the important one, because 98% of people who are undetected then will remain undetected. He said of 300 patients he's treated with Harvoni, only 1 has relapsed.
He also said that insurance is now covering earlier stages of fibrosis but I don't know how true that is.
Good luck for 2016, everyone!
So great to see your name pop up!!! ;D ;D ;D It sounds like you've got the 12wk EOT in the bag! Congratulations and, as always, thank you, thank you, thank you. I really had about given up.
So remember, kids - appeal, appeal and appeal again. ;)
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GREAT NEWS, my daughter has received a call from her nurse to say that she is SVR 12. She is cured from this virus. She is 21 years old and has all her life in front of her. Miracles do happen. The computer screen is very blurry as I'm crying while writing this. Life is beautiful. Thank you everyone for your support.
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What a weight off your shoulders, and what a joy for all of us to read! -hope you'll still visit the forums and encourage other parents of young people in a similar situation.
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Huge congratulations, Father. To both you and your daughter!!!
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GREAT NEWS, my daughter has received a call from her nurse to say that she is SVR 12. She is cured from this virus. She is 21 years old and has all her life in front of her. Miracles do happen. The computer screen is very blurry as I'm crying while writing this. Life is beautiful. Thank you everyone for your support.
Fabulous news, concerned father!! Congrats to your daughter and to you. :D
kim
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What a weight off your shoulders, and what a joy for all of us to read! -hope you'll still visit the forums and encourage other parents of young people in a similar situation.
I will always visit this site, you guys were great to me during this period.
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Wow...how wonderful. I bet it put a smile on your daughters face. Tell her Beto says congrats!!! ;D ;D ;D
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:) Wonderful to see and hear such good news. God bless both of you.
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I'll chime in too. Congrats to your daughter and to you!!! I can only imagine how as a parent you must feel to know she has a full life ahead of her without this burden. It's so wonderful to see so many getting cured with these new drugs. I'm so happy for all of us. And, I'm feeling better and better every day 15 weeks post treatment.
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I'll chime in too. Congrats to your daughter and to you!!! I can only imagine how as a parent you must feel to know she has a full life ahead of her without this burden. It's so wonderful to see so many getting cured with these new drugs. I'm so happy for all of us. And, I'm feeling better and better every day 15 weeks post treatment.
Glad to see that you are doing better everyday. It's a great day :) :) :)
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Glad to see that you are doing better everyday. It's a great day :) :) :)
Thanks Concerned Father. The reason I say that is so many struggle right after treatment and I did feel a little better but was wondering if this is as good as it gets and then this week, all of a sudden I felt better than I had in as long as I can remember. We have seen other posts who are further down the road since SVR and many things continue to improve for them and I am experiencing that on an energy level and other things... just this week. Super cool! You are right, this is a great day!
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Thanks Concerned Father. The reason I say that is so many struggle right after treatment and I did feel a little better but was wondering if this is as good as it gets and then this week, all of a sudden I felt better than I had in as long as I can remember. We have seen other posts who are further down the road since SVR and many things continue to improve for them and I am experiencing that on an energy level and other things... just this week. Super cool! You are right, this is a great day!
I noticed in the last month or so that she had a lot more energy. I had a good feeling about this.
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Ok...I am checking in with my 12 week EOT...undetected...another Harvoni success
Scout
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Ok...I am checking in with my 12 week EOT...undetected...another Harvoni success
Scout
This thread is getting better and better all the time!!! Congrats Scout, have fun on your new adventures 8)
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Congrats Concerned Father.
So happy for both of you and so glad your were there to support your daughter!
Some young people are afraid to even get tested worried their parents will find out because they are on their parents insurance.
Awesome news Scout! This is such a great thread.
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Scott, you and my daughter are sharing something in common, you got the great news on the same day. Lynn, we adopted our daughter when she was 9 months old knowing full well that she had been infected at birth by her biological mother. The first time we saw her, we both instantly fell in love with her. Hep C was not an issue but always prayed for a cure and our prayers were answered. We are so blessed to have her in our lives.
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I am so happy for your family concerned father. Congrats!
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Concerned Father: WOOHOO!!! I know that she will start to see life in a different light and my hopes and prayers are with you and your family. What you have done for her is priceless. A chance at life free from this disease is what we all deserve.
Debula AGAIN WOOHOO!!!
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Concerned Father: WOOHOO!!! I know that she will start to see life in a different light and my hopes and prayers are with you and your family. What you have done for her is priceless. A chance at life free from this disease is what we all deserve.
Debula AGAIN WOOHOO!!!
Thanks Mug, as you can imagine, we are all on cloud 9 here :)
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Here's to 2016!!!! Looks like this is the year where so many warriors are cured! I haven't checked in for awhile and love seeing all these wonderful results!
May you all have a happy, healthy life and hold your head up high! The journey has been difficult but we persevered and can now move forward with confidence and compassion for others. May the fight against cancer, MS and all other chronic diseases come to an end as well.
Thank you Michael Sofia for never giving up in spite of others saying it couldn't be done! Without his insight and dedication none of us would have had the Harvoni cure. Thank you sir! You are my hero!
Katie
http://www.newyorker.com/tech/elements/a-better-treatment-for-hepatitis-c
"Sofia realized that any effective hepatitis-C drug not only needed to get into the liver, where the virus was replicating, but stay there, to avoid unintended side effects elsewhere in the body. It is relatively easy to transport a drug to the liver: when you eat or drink something, it is absorbed into the bloodstream by the stomach and intestines, and in turn flows directly to the liver, the body’s metabolic engine. The problem is that, in their active form, nucleoside drugs don’t enter liver cells. Sofia hypothesized that if he could shroud a nucleoside with an “invisibility cloak” to get it into liver cells he could then count on the liver’s enzymes to break down the cloak and activate the drug. Once the cloak has been shed, the nucleoside would be trapped inside, protecting the rest of the body from exposure. “A lot of people were telling me when I had this idea that this is never going to work,” he told me. “People have been trying to do this for a long time, this is a hopeless cause.”
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STOP THE PRESSES!!!NEW LAST ADDITION!!!CHECK OUT MY NEW SIGNATURE PEOPLE!!! ;) ;) ;) ;) ;) ;) ;) ;) ;) ;) ;) ;)
HCV RNA VIRAL LOAD NON DETECTED Log10 <1.2 IU/ml :) :) :) :) :) :) :) :) :) :) :) :)
Got it on paper! 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8)
Houston! We have achieved SVR12! Don't even want to see My blood pressure right now! ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
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FANTASTIC TOMMY!!!
I'm grabbing a spot on that conga line. 8)
kim
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Thank You, Thank You Very Much! Sounds like Elvis. Re.: My World Wide HEP C SVR Multi National Conga line. Oh, it is on!!!!! BTW, check out My post on EOT 12 next week!
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AWESOME SAUCE!!!!! 8)
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"Not detected"
The 2 most beautiful words in the English language if you ask me
Congrats!
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Thanks to all. and I appreciate Your support!
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Thanks to all. and I appreciate Your support!
Hey, Tommy -- you're the Sun we've been orbiting around. Now that you're SVR12, everything makes sense.
"Not detected"
The 2 most beautiful words in the English language if you ask me
And to think that in high school they taught us the 2 most beautiful words in the English language were
cellar door
(no kidding!)
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So nice to see so many success stories, I love it.
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What a delight to log on from cold slightly snowy Toronto and see your news Tommy! After all the support you've given everyone - this is your moment!
Let me express it like any good Australian would: Go you good thing!!
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Thanx Gnatty, Concerned , and Philly! You guys are the best ;) Right now I needed the bright sunshine in My little corner! 8) 8) 8) 8)
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Welcome to the undetected train Tommy! It's quite the feeling seeing it in your hand isn't it? Congrats!
Scout
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STOP THE PRESSES!!!NEW LAST ADDITION!!!CHECK OUT MY NEW SIGNATURE PEOPLE!!! ;) ;) ;) ;) ;) ;) ;) ;) ;) ;) ;) ;)
HCV RNA VIRAL LOAD NON DETECTED Log10 <1.2 IU/ml :) :) :) :) :) :) :) :) :) :) :) :)
Got it on paper! 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8)
Houston! We have achieved SVR12! Don't even want to see My blood pressure right now! ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
Very cool Tommy! I would insert some smiley faces here, but you used them all!
dm
Very cool Tommy
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Yes Maam, I have just about worn out My copy since yesterday afternoon! :D
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Dagburnit Tommy...yea had us all on pins and needles! WoooHooo!
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For some reason I just am destined to have to wait for My Lab results. It seems to happen every other time!
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Good things come to those who wait, (patiently or otherwise)! Such happy news lately on this topic. Here's to more of the same!
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12 wks Harvoni plus riba
tx naive
Genotype 1a
Stage 3
VL 17.5 mill
4 wk 12 wk on treatment and 12 wk and today 24 wk post SVR24 undetected.
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12 wks Harvoni plus riba
tx naive
Genotype 1a
Stage 3
VL 17.5 mill
4 wk 12 wk on treatment and 12 wk and today 24 wk post SVR24 undetected.
Yep, all good!!! Congratulations RicPark!!!
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GO RIC, More good news. great to hear another undetected! Savor the victory.
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Congrats ricpark...another one for the good guys
Scout
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12 wks Harvoni plus riba
tx naive
Genotype 1a
Stage 3
VL 17.5 mill
4 wk 12 wk on treatment and 12 wk and today 24 wk post SVR24 undetected.
yesh!
dm
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ricpark,
50 years of "C" 12 weeks of cure. Gotta love it. So happy for you.
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Cured! EOT 14 weeks undetected after 12 weeks Harvoni. This is going to need an attitude adjustment. Someone with hep C to just someone! Wow.
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Cured! EOT 14 weeks undetected after 12 weeks Harvoni. This is going to need an attitude adjustment. Someone with hep C to just someone! Wow.
I'd say someone awesome!!! Congrats!
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Cured! EOT 14 weeks undetected after 12 weeks Harvoni. This is going to need an attitude adjustment. Someone with hep C to just someone! Wow.
BDK, what a succinct way to say what whole threads on this forum convey -- thank you, and Bravo!
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Congrats Ric and DBK
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Cured! EOT 14 weeks undetected after 12 weeks Harvoni. This is going to need an attitude adjustment. Someone with hep C to just someone! Wow.
Well thats cool! 8)
dm
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To quote Martin Luther King " I AM SOMEBODY" Great news yet again!
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Thank you everyone! And good luck. I'll still be hanging out here to help!
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So excited to spread the news, Undetected at 14 weeks Post, YES!
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Sounds like a cure to me Congrats.
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Thank you, Congrats to your Daughter! It's been a long road for me, looking brighter everyday 8)
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But you arrived at destination :)
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Man , there are a butt load of un-detected/not-detected rolling in. Seems like the ball is rolling exponentially faster and faster. So good to see all of us posting fantastic results here. Just think that a few years ago this would be unbelievable if not impossible! Such a great time we live in what with all of the new technology and medical break throughs that we are experiencing.
CONGRATULATIONS TO EVERYONE!
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Tommy, it's wonderful to see how many people are posting undetected results. I think when this thread began that the numbers were looking a little scary,,,but now the good results are far outnumbering the relapses, by staggering numbers. What a wonderful time this is for people who have been suffering from this dreadful disease for so long. I can say that emotionally and physically I am soooo much better, now my aches and pains are pretty normal with people my age. I am totally digging it!
Scout
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Hi...do you have a post for POST 24 weeks of Harvoni? My EOT was 1/13/16 and I am interested in knowing their cure rate. Also interested in knowing if they had post treatment side-effects. I had great patience and grace while on tx but since EOT no patience, no filters on what I say and very very weary. Dumping ammonia the first week and feel like flu symptoms.
Thanks!
HCV since 1984
Genotype 1b
03/2002 to 10/2002 Pegintron/Riboviron - Failed had to stop
07/18/15 VL = 7,100,000
07/18/15 FibroScan F4
07/18/15 Necroinflam.act.grade A3
07/18/15 ALT 196 [ref 6 -29] AST 149 [10-35]
07/31/15 began Harvoni - 24 Week Course of Treatment
08/21/15 VL = 1,520,000 ALT 39 AST 34
After 8 weeks = Undetected & enzymes returning to normal!
09/18/15 VL = Undetected!!! ALT 27 AST 31
12/23/15 VL = Undetected!!! ALT 30 AST 26
01/13/16 EOT
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Hi...do you have a post for POST 24 weeks of Harvoni? My EOT was 1/13/16 and I am interested in knowing their cure rate. Also interested in knowing if they had post treatment side-effects. I had great patience and grace while on tx but since EOT no patience, no filters on what I say and very very weary. Dumping ammonia the first week and feel like flu symptoms.
Welcome to the forums, 2Thrive! Here is a link to the discussion thread for reporting SVR24 on Harvoni: http://forums.hepmag.com/index.php?topic=3205.0
A number of us have experienced some sort of post-treatment syndrome/malaise/whatever. Various theories flying around about what is behind that. I believe it is due (at least in my case) to a temporarily over-stimulated immune system. And the the fluish symptoms you describe, are simply an immune system not being ready to turn off or slow down after 45 years of being dialed up high to keep the HCV under control. I think the rapid clearing of virus (never before possible until these new drugs) leaves our bodies needing to make a LOT of adjustments to find the new normal post-cure. Some bodies take longer than other to find that new normal.
best,
kim
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Hi 2Thrive and welcome
I am one of the SVR 24 people got my results in October 2015.
I really don't feel different than last year or the year before only side effect I had was anemia from ribavirin that resolved within 10 days after I stopped taking it.
I just feel like someone who is pressing on 58 years old who had hep c for 37 years and cirrhosis for 8 years and could stand to lose 20 lbs or so but mostly I feel fine.
We are generally considered cured at 12 weeks 24 weeks just puts a fork in it I dont think I have seen anyone who made SVR 12 who did not make SVR 24 on the forum.
Cure rates for Harvoni are anywhere from 85% for those with advanced Child "B" or "C" cirrhotics who are on the liver transplant list and are very ill with severe liver disease to 99% for those who are treatment naive with little to no liver damage and low viral load.
What your odds might be depends on your prior treatment history, liver damage, and genotype. Also age, gender, and BMI may also be factors in treatment success.
I had most of the negative treatment factors being a 3 time null responder to interferon based tx, and also relapsing on Sovaldi/Olysio. Also having compensated cirrhosis and being on the high side of overweight with a BMI of about 29.
But even with all that I was cured and likely you will be cured too!
good luck on treatment
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2Thrive, the fatigue issue was somewhat my experience post-Tx. During Tx, Harvoni gave me extra energy -- I got an amazing amount done during those 12 weeks. But after Tx, I would periodically have three days in a row when I needed an enormous amount of sleep. That phase did pass -- I now regularly have more energy than before Tx, although not as much as the "Harvoni High" gave me during Tx.
I've also had a lot more aches and pains post-Tx than during Tx (but again, not as bad as some prior years). I've also gained weight that is proving incredibly difficult to lose, since the ramped-up appetite I had on Harvoni has continued.
On the other hand, I am sleeping much better than I have in decades. During this past week, there were three days in a row where I slept 8 hours straight without needing to go to the bathroom in the middle of the night. Also I definitely have much less dental plaque, and what I have is much easier to remove (my dentist confirms this).
My hepatologist believes it will take more time to find out which of my other ailments were caused by the HCV rather than being separate diagnoses. He's waiting until 9 months post-EOT to do another FibroScan to find out whether my F4 has gone down. (If my 19.5 kPa goes below 12, I won't have cirrhosis any longer.)
Here's hoping you are almost done with the flu-like phase.
Gnatty
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I just realized when I press into my abdomen with my fingers I am not near as sore and tender as before treatment. I assume my liver is beginning to heal, I am feeling more and more normal. Hurray! a great feeling to be closer to normal.
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Checking in one year after Harvoni treatment.
My doc insisted on a one year post treatment test.
I'm done with tests and feel better than I have in years. Harvoni is a miracle drug!
01/19/16 - 1 Year post Harvoni VL test - Not Detected - ALT/AST 22/22
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Great news Joe
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Awesome Joe living large and hep c free!
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It has been a while since I have posted. Sorry to not have all my stats.
Just got my labs for 24 actually almost 30 weeks. I am undetected. Alt and Ast are 34 and 35. My white blood and platelets are a little low but my doc is not concerned.
I guess this is really the start of the next part of life for me. It has been a long ordeal as we all have.
Good luck to all and I will post one year results when they come.
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Great Stuff!! Junkyard and JoeK999
I am going on 8 months without hcv and today I noticed something important today about my water works which has not been up to snuff for about 15 YEARS. I am 63 and always thought that I just had the male urine curse! You know the BPH dribble, dribbles.
Now 8 months free from hcv hell I can have my morning 2-3 coffee, a bunch of water and can work until noon without having to take a leak every hour or so! When I exercise hard over an hour or so my urine does not quickly turn dark anymore, which I had grown accustomed to! I just attributed darkened urine and having to take a leak all the time to OMS (old man syndrome!)
So it seems that as cirrhosis backs off your renal system should quickly improve as well. I feel GREAT!!! and all these positive results are absolutely wonderful.
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:)Feel So Blessed. My wish is that everyone can get treatment that wants it!
12 weeks EOT - undetected
infected since age 15 and finally free at 55 - Thank You to God; to Gilead; to Blue Cross/Blue Shield and to the person who contacted the Board of Nursing. Without that meeting with the board I never would have known of available programs to help offset costs being provided by Gilead. Thank You!!
Also thanks to Lynn for helping me to settle down when I was still detected at around 25 days.
again - SHOUT OUT
12 WEEKS post treatment- UNDETECTED -
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Wooo-hooo! Congratulations!!! ;D And an inspiration for all!
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Woo whooo annajustanna and congrats!
Now it is time to adjust those sails and tack into the wind!
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Another success story WOO HOO.
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hey guys, heads up for everyone. I am one year out from tx this month and asked my family doc for labs to feed my OCD lol Results today
AST 14
ALT 12
HCV not detected
Sorry I have been MIA so long (crazy busy) but i wanted to let people know to never give up fighting and never give up hope.
stay cool everyone
8)
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ROLLIN' , ROLLIN',ROLLIN', KEEP THOSE RESULTS A ROLLIN, :) Great to hear Kate. Here is hoping all the Viekeirans bounce back as well! It is a long, hard , weary path. But the end results justify the means!
Lots of MIA posters are showing up.
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Real nice Kate.
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1. 4wk - 12 wk EOT VL status: 12 week- RELAPSE VL 1.3 million
2. Treatment duration: 24 weeks
3. tx naive or experienced: experienced- Daclatasvir clinical trial- RELAPSE
4. Genotype (1a or 1b):1b
5. F1-F4 fibrosis status (date) F3-4
6. Initial VL (date) APRIL 2015 1.7million
7.ALT 41
8.AST 32
What now? Very depressed.
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Do not give up, they are coming up with new medication. Do not give up.
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Do not give up, they are coming up with new medication. Do not give up.
Quoted for truth.
I'm sorry your still in the battle. That sucks. But it's different than being defeated.
on edit - And welcome to the forum! Hang out. There's good people here.
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Doing a happy dance!!!!!!!
12 week Post TX Harvoni UNDETECTED!!!!!
I burst into tears when I picked up results at the lab. All those weeks of suppressed doubt poured out of me replaced by much JOY!!!!!!
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Doing a happy dance!!!!!!!
12 week Post TX Harvoni UNDETECTED!!!!!
I burst into tears when I picked up results at the lab. All those weeks of suppressed doubt poured out of me replaced by much JOY!!!!!!
Congrats, I had the same reaction when my daughter was SVR 12.
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Coastal Girl, Looking good if I do say so myself. Always happy to see more and more graduates getting their SVR12 diplomas! 8) 8) 8) 8) 8) 8) 8) 8) Onward and forward to SVR24 everyone! Damn it sure does look extremely bright for the future :) :) :) :D :D :D ;D ;D ;D
LIFE IS TO SHORT TO BE SERIOUS ALL OF THE TIME. SO IF YOU CAN'T LAUGH AT YOURSELF, CALL ME! I'LL LAUGH AT YOU! ;) ;) ;) ;)
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Coastal girl,
Nice!!!! Blessings moving forward.
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Congratulations CG
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All this good news, I hope we can share it. I am looking for people to submit their Hep Stories. Everyone has a story, and you don't need to be a good writer to tell it. We'll help with the story. Submit stories to: http://www.hepmag.com/hep_stories.shtml (http://www.hepmag.com/hep_stories.shtml)
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Congratulations, Coastal Girl! What wonderful news.
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Thanks All,
I'm a Happy Happy girl!!!!
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Congrats I hope to be able to post here good news if I have it soon :)
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Hello Friends MY FINAL STATS CURED 8 weeks HARVONI
Infected age 21 1982 treatment naïve until HARVONI
genotype 1a,(CC)
f0-f1
necro a2-3
vl 1million undetected after 3 weeks sept22 2015 & 6weeks on tx,Oct 22,2015
ast 90 50 in 2004 NOW 23 lowest since im 21
alt 100 49 in 2004 NOW 21 lowest
EOT
UNDETECTED 4weeks liver enzymes 15/16
UNDETECTED 12 Weeks 16/18
UNDETECTED 15 weeks liver enzymes 13/15
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Exciting -- CONGRATULATIONS! So glad you could be cured while still f0-f1.What a fully healthy life you now have ahead of you!
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Thank you! Knowing I had HEPATITIS my whole life helped me manage and watch my health and fitness,linda
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Congrats lin44.
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lin44 that is good news only 8 weeks of Harvoni and cured. Taking good care of your health makes a big difference in the condition of your liver. What you eat and what you put on your skin passes through your liver in some way. A representative from Schering Plough at a support group meeting several years back said that research study found that antiperspirant greatly affects the liver in negative ways. My doctor about 25 years ago told me I needed to be careful what I eat no more fast foods to eat natural preferably organic to reduce stress on liver. The advice made a big difference in the condition of my liver today.
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Congrats coastal, that's fantastic
Scout
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camper did you get sick when you were infected like I was??
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I had discomfort and tenderness in my abdominal area and would get very fatigued and would need to get a lot of rest. I took milk thistle every day for about 20 years I think that helped. Very happy to have been cured and each week I feel a little better and stronger. My doctor told me my liver would never return to a normal liver but would heal itself to a point just how much time will tell. The biggest thing I have been noticing is how clear my thoughts are now I can remember numbers and how words are spelled much better. So thankful I have lived long enough and others that a cure has been found and feel very sorry for those that did not live long enough to be cured.
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Dear Friends,
I would like to share some news about my mother's post-treatment developments. Some of you know that my mother had 3m Harvoni treatment. She achieved EOT and SVR12. But then bad luck happened, SVR24 was positive with low viral replication. We disappointed because of relapse. Moreover, her all liver tests elevated. ALT,AST, GGT were very high, out of the normal range. All of those happened in December,2015
Beginning of the March, mother was tested for blood work. The results are shocked me. All liver tests and blood work are in the normal range. ALT, AST, GGT, Albumin and platelets are in the good range. In other words, they have returned back to normal.
Mother has only complain: abdominal ascities.
Our doctor says mother should have new viral test (PCR). He says, Harvoni is quite new drug and even doctors don't know how it affects virus and human immune system. Harvoni changes virus RNA and makes it fragile. Even virus survives after Harvoni, it is not so strong as before. While virus is infirm, immune system gets opportunity kill it once and for all.
He says we have a chance that virus is gone or at least very weak.
Now mother and me hope for a miracle. We will go for PCR test at the end of March. We are so tried and so hoping to hear good news.
What do you think? Is it possible that virus with low replication 6 month after Harvoni treatment is gone then?
notes: 3m Harvoni treatment; EOT negative and SVR12 neqative. SVR24 low virus replication and bad liver tests. after 32 weak of treatment all liver tests and blood work are in the norma range.
Please share you opinions.
I kiss all of you and wish good and strong health. Hope all members will survive and slay the dragon!
Thanks
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Hoping for the best with her new PCR test
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Wow, don't really know what to say about that one. I am sorry to hear of the relapse, that is so unusual to have a 12 week EOT that is negative and then a 24 week that shows relapse. I would find out from Gilead what the statistics and the protocol is for re treatment. Specifically for Genotype 3, if I read your statement correctly. Please let us know what you find out, and good luck and prayers for your mother.
Scout
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Wow, don't really know what to say about that one. I am sorry to hear of the relapse, that is so unusual to have a 12 week EOT that is negative and then a 24 week that shows relapse. I would find out from Gilead what the statistics and the protocol is for re treatment. Specifically for Genotype 3, if I read your statement correctly. Please let us know what you find out, and good luck and prayers for your mother.
Scout
Thanks a lot. She is Genotype 1b.
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I'd be curious to know if anyone's kept an updated running total of the people posting here. I'm starting 12 weeks tomorrow, and really wondering how closely the clinical trial numbers correlate to real world results.
Thanks to everyone who's contributed to this; it's impossible to put into words how much value this board has had for me already.
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Hi Baxter
That was kind of the original purpose of this thread
A couple of pages back I found this post by Mugwump 12/11/15 which links to some other post stats but not really a statistical analysis of SVR vs relapse just SVR data as posted by members there have been many
https://forums.hepmag.com/index.php?topic=2665.msg35687#msg35687
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Also found this article from 66th Annual Meeting of the American Association for the
Study of Liver Diseases Boston, MA Nov 13-17 2015
Summary from AASLD 2015 for Hepatitis C Beyond 95% SVR cure rates: still room for improvement?
http://www.natap.org/2015/AASLD/AASLD_165.htm
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1. 4wk EOT VL: Undetectected
2. 8wk EOT VL: Undetectected
3. 12wk EOT VL: Undetectected
4. 36wk (9 months) EOT VL: Undetectected
5. Treatment duration-12 weeks
6. tx naive
7. Genotype 1a
8. fibrosis status--F3-F4 (Mar 2015)
9. Initial VL (2.1million/Oct 2014; retest 700,000/March 2015)
10. AST (SGOT); 22. ALT (SGPT); 20. First time these numbers have been in the normal range in over 30 years (test results after 12 wk EOT).
Good luck to all!!! Will check back again.
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SVR36 -- EXCELLENT! Yes, please keep us posted on SVR48 or 52 or whatever.
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MDJ -- WOW!!!! I just hope to be able to post the same some day, in the near future. FT
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Woo Hoo another success story. :)
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4 wks E.O.T. V/L UNDETECTED :D
Now its some progress for me
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Glad to hear your good news, jakas.
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Coolio Jakas!!!
4wk labs tell it. You got this. Conga line worthy.
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Alright jakas WTG
Conga line getting ready!
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The dragons are dropping like flies these days! Good News Jakas!
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"I bet there are some really great HEP stories here among all these dead dragons," said the desperate person looking for some HEP stories in order to share hope with others...https://www.hepmag.com/category/hep-stories (https://www.hepmag.com/category/hep-stories)
BTW, today's story in incredible: https://www.hepmag.com/article/jm (https://www.hepmag.com/article/jm)
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Well,
My 12 week tests came back-Undetected.
The virus was basically wiped out by Mesochem sofosbuvir and ledipasvir the first 4 weeks. A 12 week tx can currently can be imported in 3-5 days for $860.00- no prescription required.
Incepta's Twinvir for $1000.00.
Dr. James Freeman is presenting his REDEMPTION generic clinical trial results next week at EASL. The findings are stellar. Generic prescriptions may become easier to get in the U.S. after those results are published.
Gilead is interested is selling and making money. The only reason they would care about relapse is that it might affect their sales.
Sad but true.
CM
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Coach Mike -- FANTASTIC NEWS!! I've been watching for your post on the 12 week results; very glad to hear this. What a battle you went thru to get to this point! Can't wait to see what new info comes out of the EASL meeting, should be very interesting. This is a stellar year for HCV treatment, finally.
I have blood work next week and am keeping fingers crossed for the magic word "UD" this time. Again, so happy to hear your news!!! FT
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Looking good Jakas - You are well on your way to SVR12 :)
Congrats Coach Mike, I am so pleased for you. :)
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Great news Jakas! Good on you.
Coach Mike, congratulations - one small step for man, a giant step for man(&woman)kind!
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Coach mike,
I have often thought about you through this waiting period. All one needs to do is read through all of the harvoni posts to get the idea that waiting for labs can be a bit stressful. For you, however, and others forced to go the generic route, there must have been an added "guinea pig" stress element. You got the meds from over seas for less that a fraction of the cost of Harvoni. It may turn out that that is the sensible way to go.
Congrats and thanks for your contributions to this forum and giving hope to those unable to acquire the drugs through the conventional route.
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12week after tx no virus
starting vl 211,000
8weeks harvoni
no prior tx
24 week blood test july-2016
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Excellent news!! I hope to be not too far behind you in my quest for SVR. FT
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Awesome another win for the good guys.
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Hello everyone,
It is fantastic to see all the undetecteds going on around here. Who could have ever believed it after so many waited for so long. I am forever indebted to those who endured the torture of interferon and helped pave the way to today's DAA's. Thank you Michael Sofia.
1. 4.5 wk EOT - vl UNDETECTED
2. 8 weeks Harvoni
3. Tx naive
4. 1a
5. F0
6. 657,000
Now I wait for the 12 week vl but I am feeling optimistic.
Kim
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I posted this on the 24wk post tx thread too.
Hi everyone
It's been a long time since I've posted but I do check in from time to time. Most of the old names are gone but Lynn and Eric good to see you guys still posting.
Anyway I just got my 58wk post tx lab results, UND!
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YAY Bob! Me too!
Just wanted everyone to know, I did get my requested 12 month post treatment blood work done when I had an extensive panel completed. Got the results and every single test was perfect from thyroid to cholesterol from liver panels to tumor marker and of course my VL is UNDETECTED.
Here is a wish for all of you to conquer the BEAST and have a healthy happy life.
Enjoy your summer and the very best to all of you!
Katie
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Hi Katie
Great news!
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Wonderful news Katie!!!
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Well done Katie. God Bless ! :)
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So nice to see all the success stories, kept them coming.
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Katie, fantastic news!! Did you have to request that 1 year test or was it recommended by your doctor? Thanks, FT
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Katie, fantastic news!! Did you have to request that 1 year test or was it recommended by your doctor? Thanks, FT
I actually requested it from my doctor when I was getting my annual blood work done. Nothing was challenged and I wanted the confirmation that all previous tests were accurate. I feel confident now, that I am clear and feel that chapter of my life is closed.
Thanks everyone for the responses....... I love how this forum shares the Joy and the Sadness and gives support no matter what. You all have helped me through a difficult time and I am here for you too!
Katie
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Katie, fantastic news!! Did you have to request that 1 year test or was it recommended by your doctor? Thanks, FT
My daughter's doctor actually scheduled another test for one year after she achieved SVR.
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Thanks Katie and Concerned Father, I just wondered, as my hepatologist gave a bit of a vague answer this week on if they would be doing any tests after SVR12 or they would let my GP f/u on that. I, too, am sure I will want that RNA test at 1 year and maybe even 2! FT
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concerned father
I remember you wanting to get your daughter on Harvoni. Sounds like great news for you/her.
Future Thinker
I replied to your post the other post tx thread.
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The greatest news of my life Bob :)
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4wk UND
12wk svr12 UND
12ks of harvoni and ribavarin
2 failed prev tx
Gen 1
F4
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Pablo
YAY! Congrats:)
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Pablo, I'm so glad "the third time's the charm." Victory!
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Si se puede Pablo!
Congrats!
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Great news Pablo. :)
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@ Pablo well done !! Super news.
Is this still the case ?:
Stat is for Harvoni 98.5% predictive at 4 weeks SVR and 99.8% at 12 weeks
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@ Pablo well done !! Super news.
Is this still the case ?:
Stat is for Harvoni 98.5% predictive at 4 weeks SVR and 99.8% at 12 weeks
We have not seen anything to contradict this except we saw a propensity of shortened 8 week treatment relapses for those who had only minor liver damage but a good correlation for those who did not have any liver damage clearing and achieving SVR cured.
Also it seems that shortening the treatment to 12 weeks if you have cirrhosis is also not a good idea as we have also seen those who were shortened to 12 weeks relapse. But as others have stated most likely those who relapsed were more likely to post this unfortunate situation whereas many other forum members who did clear have not posted to this thread.
We can say that the clinical decision to shorten anyone to 8 weeks if there are any signs of liver damage whatsoever is questionable.
How many of the individuals on this thread that have RAVs is totally unknown and we should not forget that up until last year the RAVs that make Harvoni and other DAAs less effective were an unknown factor.
ABOUT THE POSSIBLE DANGERS OF SHORTENING TREATMENT:
It is only sensible that shortening of treatment might over time also have the adverse effect of creating new RAVs. We are just starting to see how this disease has managed to be so elusive and the study of how it manages to survive DAAs is really important.
Here is hoping that RAVS are only temporary switches in the RNA sequence that change and that DAAs will be effective for retreatments. I have long thought that the mechanism that HCV uses to trick the immune system might be like a clock that cycles through a sequence of variants. Essentially that HCV in itself is a diabolical polymorphic time bomb not an RNA sequence set structure.
Here is hoping that I am correct.
Eric
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8 week tx of Harvoni. Just received 4 week EOT......undetected!!!
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Way to go, in 8 weeks you will get confirmation that you are cured. Congrats.
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HEP C will not kill JR :)
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JR
Congrats!!!
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I just had a 6 week post treatment result iof undetected. Harvoni and Twinvir are chemically identical. All of my other info is in my profile.
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Congrats Malou! That's a great feeling! :)
kim
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Thanks Kim, particularly since I had no side effects. Interferon was a nightmare for me that I will never forget. Twinvir was a breeze and if I had the 'harvoni' high, I loved it! I am very grateful that this drug was developed. ML
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Wow FT. Good work going straight to the source and rocking it.
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malou
Congrats!
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Thank you Bob V
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Malou, fantastic news! Great to hear about success with generics. FT
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I am surprised that nobody has posted results in almost a week! I thought a lot of people came off treatment mid to late march.
It's too complicated to "cut and paste this and that" .. "don't do this, don't do that" "Follow these rules"
That's why I haven't posted my, as of today, clean bill of liver health.
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beflat10r
Congrats!!
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..Back at ya!!!!!
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1. 4wk - 12 wk EOT VL status
2. Treatment duration
3. tx naive or experienced
4. Genotype (1a or 1b)
5. F1-F4 fibrosis status (date)
6. Initial VL (date)
1. Undetected at 4-12 EOT
2. 8 week treatment harvoni
3. Tx naive
4. 1b
5. F0
6. VL 350,000 Initially diagnosed in 2004, infected in 1976
CURED
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yay!!!!!!!!!!
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I love these success stories, keep them coming.
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Hepaway
Congrats!!!
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Congrats Hepaway! Never gets old seeing it or saying it! Brie
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Hello Its been a while Treatment Update
ANOTHER DRAGON SLAIN!!
I have received SVR 12 status after a 12wk regimen of Harvoni / Ribavirin. First treatment was Sovaldi / Olysio 12wks. UD at wks 4, 12, relapsed 12wks post.
Initially I was denied Harvoni but approved for VP.That particular regimen was Not Recommended by AASLD Guidelines due to cross resistance from previous treatment.
Fast forward 7 mths, I was approved for 12wks Harvoni/Ribavirin with some help from a forum friend and a person at Express Scripts who was extremely helpful in monitoring my appeal and making contacts, etc.
I began treatment Dec. 6, '15. Naturally after failng a DAA regimen, my expectations were a bit simmered. The 12wk regimen of Harvoni/Ribavirin was a recommendation based on limited data.
Treatment went fairly smooth, much like the Sov/Oly treatment with the added joys of riba rage and awful itching. I was UD at wks 4 & 12, other labs much the same as first treatment.
I began experiencing occasional lower right and left quadrant aches and pains. I have seen other patients reporting similar experiences so I wasn't overly concerned. A short time later I learned that the recommended regimen for S/O relapses had been revised from 12 to 24wks. This newly revised recommendation had been implemented 3 days before end of treatment, however, I was not to learn of it until 2wks post treatment. I was quite anxious about this new information as you can imagine and I soon began experiencing generalised abdominal discomfort, digestive issues (loose stool), some muscle and joint aches and pains which at times awakened me.
I was about 99% sure the virus had returned so had Doc order enzyme test. To my surprise, ALT dropped from 21 EOT to 16 3wks post. AST remained unchanged at 17. I was somewhat encouraged by these results but still concerned, naturally. Digestive and muscle & joint pains continued intermittently. At 12wk post treatment lab time I was almost sure the virus had not been cleared. Actually I went in a few days early. Anyways, I was extremely relieved to see Not Detected.
What a rollercoaster ride this has been.
I am working on De-Stressing and am feeling a bit better. It feels good to say I USED to have Hepatitis C.
I have learned much browsing these forums. Thank you to all who contribute.
Good luck to everyone seeking treatment and those on treatment.
Brad
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CONGRATS ON YOUR SVR12 BRAD !!!
And yes, it DOES feel good to say "I had Hepatitis C." 8)
kim
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Hi Kim, Thank you very much. I've waited a long time to be able to post that. I hope your post treatment struggles resolve soon. I am struggling a little bit more than the first treatment with S/O but I think it is stress related. Stay healthy and I hope you can enjoy your summer. Take care Kim
Brad
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YAY!!!!
I'm gonna use that "I USED to have Hep C"!!!
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All right Brad that is fantastic news! Welcome to the "I used to have hep c" club!
I still having trouble getting my head around the concept 1 year post but it's all good!
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Brad the best stress pill is to do something that you have put on the back burner because of HCV. Otherwise every little ache and pain will make you worry.
I am not at all saying that some of us did not experience a very hard ride getting rid of the beast but I know that it is time to smell the roses, cow shit and everyday living that we have forgotten how to enjoy!
It is fantastic hearing you cleared without a hitch on 12 weeks of Harvoni and Riba. I am really lucky that I did not go through another relapse which is what might have occurred if I went on S and O in 2013 not waited for a better alternative to be approved in Canada.
Cheers
Eric
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Hi Kim, Thank you very much. I've waited a long time to be able to post that. I hope your post treatment struggles resolve soon. I am struggling a little bit more than the first treatment with S/O but I think it is stress related. Stay healthy and I hope you can enjoy your summer. Take care Kim
Brad
Thanks Brad! I'm hanging in there! ;)
kim
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Excellent news Brad!!! Congrats and enjoy your new HepC status.
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Thank you bflat10R, Lynn K, Mugwump, BobV,
I haven't fully digested this news yet. Half of my relief is knowing I wont have to research or battle to get meds anymore.
I would like to point out that my on treatment and post treatment physical ailments were likely stress induced. I will say I wasn't crazy about the Ribavirin.
Mugwump, Yes , you're right. It is time to smell all those wonderful smells the world has to offer!
Have a great Memorial Day weekend.
Brad
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Hey Brad...I am thrilled for you.
What an ordeal. I know the feeling all to well...thinking relaps. However, in your case after failing a modern drug, the frustration and fear must have been unsufferable. Peace now my friend...that bitch is toast!
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Hey, SVR12! That's the sort of numbers we like Congrats Brad! :)
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Hi all, I am finally able to post in this category! Just wanted to share my VL at 2 weeks EOT continues to be UD, so still on the right path! Next test not till August. FT
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Congrats FutureThinker great news.
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Congratulation Brad on a long and bad ass battle. You deserve a break.
Congrats to FT, too. I knew you would do this.
I'll post my 4 week EOT late next week. I'm getting better but still get unexpected visits from the Riba Monster. Good thing my sword is but a metaphor. Can wait to be in the office "had" club.
And thanks again to all for the ongoing support.
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welcome to the ranks of the fittest FT
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Forest dweller here..
Just got back 12 week end of tx Vl...undetected...waiting for the 24 weeks to get final test done.
1b
>6 million
Fibroscan 2-3
12 weeks Harvoni tx
4 week result- down 5 logs
8week undetected
12 week undetected...
WISH ME LUCK!!!!!!
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Sorry, I shouldn't have posted yet!!!!..haven't had any post treatment tests done.....
Forest dweller
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Congrats - Forest dweller, Future Thinker. Looking forward to seeing those cured posts coming shortly!
Determined - Thank you and yes it was a bit of a battle but we don't go down easy, do we?! Good luck on your SVR.
Philidelphia and beto - Thanks and I hope to be adding lots more numbers to that SVR and Yep beto...the bitch is toast!!!
Peace all
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1. 8 wk EOT VL status = HCV RNA Undetected as of 6/13/16
2. 12 wks tx with Harvoni started 1/19/16
3. tx naive
4. Genotype 1b
5. F1 fibrosis status (12/15)
6. Initial VL (1.5 Million 12/15)
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Allen (and all who have recently joined), welcome to the SVR club!
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Doc phoned SVR 12 :) next check for SVR 24
Big THANKS to all of you here for helping in the journey
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Wonderful news, jakas!
You've helped many people here, too.
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Nice Jakas...feels good don't it :D
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Congrats to all and keep it coming I love it.
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Congratulations to everyone slaying so many dragons of late.
I just learned yesterday that my 12 week EOT result was yes yes target not detected! SVR 12 as they say.
As you all well know, I think the wait for results was the hardest part of the 8 week Harvoni treatment. Needless to say, I burst into tears when I found out. It is still hard to believe but I am working on that.
Good luck to everyone still awaiting results or presently on treatment. Next up, SVR 24..
Kim 8)
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and now you can write "HAD" -- congratulations, Kim!
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Nice Jakas...feels good don't it :D
YYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYES !!!! :D :D
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Great news Jakas! Those are great words to hear :)
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Jakas and Kimlav, DOIN' THE HAPPY DANCE FOR YOU!!!!!!! Tears of joy are a very good thing and I'm sure when I get my SVR12 news, I'll be doing the same thing. All the best to you both -- the future is very bright!! FT
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Congrats Jakas and Kimlav,
It is wonderful news for both of you and wishing you continued success. I am late getting my 4 week eot test done. I must do it next week and hope to join you all!!! Brie
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Kimlav, I missed yours! Congratulations are most certainly in order. :)
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Congratulations, Jakas and Kimlav. So many people achieving SVR. It's always such heartening news. Thanks for letting us know.
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Congrats to Jakas, Kimlav and to all our fellow warriors who have beat the dragon! Good luck to those still in the fight
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What is that ??? An earthquake ??? Nope , just the evergrowing Happy Hepper Conga Line snaking around the globe adding folks as is expands ever larger each and every day! :) :) :) All Hail Heplandia!!
I HAVE SEEN BETTER DAYS , BUT I HAVE ALSO SEEN WORSE. I DON'T HAVE EVERYTHING I WANT , BUT I DO HAVE ALL THAT I NEED! I WOKE UP WITH SOME ACHES AND PAINS , BUT I WOKE UP! MY LIFE MAY NOT BE PERFECT , BUT I AM BLESSED.
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My daughter has just received her result of her one year after treatment results. UNDETECTED. :)
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-very glad to read the good news.
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Wonderful news! All undetectable results are cause for celebration, but I particularly like hearing them from parents!
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Concerned Father - HAPPY DANCIN' TIME!! I am sure you are so relieved and now all can get on with their lives. All the best, FT
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12 week Harvoni post treatment PCR RNA on 1/1/2017 undetectable. Previous history of Interferon 1 million units three times per week in the late 90s with no response (viral load was higher than when I started). Genotopye 1A. I don't remember my initial viral load.
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1. 12 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Don't remember initial viral load
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bharrisrn, congratulations on reaching SVR12!
Gnatty
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Happy belated congratulations to You guys! 8) :)
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1. 12 wk post treatment UNDETECTED
2. Treatment duration: 8 weeks
3. tx naive or experienced: tx naive
4. Genotype (1a or 1b): 1a
5. F1-F4 fibrosis status (date):no fibrosis
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Hi Angelica and welcome to the forum!
Congrats on your EOT results of not detected. :)
Is this just your EOT result? Not a big deal but the topic is "After tx(POST) 4wk or 12 wk SVR RESULTS."
If you haven't made those milestones yet please do come back and update when you get there!
Good luck on making it to SVR12 and officially cured!
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Hi Lynn,
thank you. I have changed my previous post and I hope it is now clearer. I am 12 weeks post treatment already. ;D
Angelica
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Alright awesome sorry for my confusion and congrats on your cure!
Beautiful word cured :)
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1. 4wk - 12 wk EOT VL status 12 week SVR- undetected
2. Treatment duration- 8 weeks
3. tx naive or experienced- tx naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) - F2 (8.5kpa) a week and a half before beginning treatment, F3 (11.5kpa) 24 weeks after EOT
6. Initial VL (date) 1.1mil
Did not expect my fibrosis level to be increased. I expected it to be the same or, hopefully, improved.
Received no explanation, no advice, no thoughts from my Liver Specialist upon the current Fibroscan results.
Only thing that happened was for another Fibroscan to be scheduled for one year from now.
I requested blood work for a 24 week SVR test but was told no "because I was cured".
I feel like I was left hanging with no help and an increasing problem. I feel like that because I was.
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Fibroscan results in mid ranges are not that accurate.
Per the American Association for the Study of Liver Diseases (AASLD)
http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have
Monitoring Patients Who Have Completed Treatment
Patients who do not achieve an SVR, because of failure of the treatment to clear, or to maintain clearance of HCV infection with relapse after treatment completion, have ongoing HCV infection and the possibility of continued liver injury and transmission. Such patients should be monitored for progressive liver disease and considered for retreatment when alternative treatments are available. Patients who have undetectable HCV RNA in the serum, when assessed by a sensitive polymerase chain reaction (PCR) assay, 12 or more weeks after completing treatment, are deemed to have achieved an SVR. In these patients, HCV-related liver injury stops, although the patients remain at risk for non-HCV-related liver disease, such as fatty liver disease or alcoholic liver disease. Patients with cirrhosis remain at risk for developing hepatocellular carcinoma.
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1. 4wk - 12 wk EOT VL status 12 week SVR- undetected
2. Treatment duration- 8 weeks
3. tx naive or experienced- tx naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) - F2 (8.5kpa) a week and a half before beginning treatment, F3 (11.5kpa) 24 weeks after EOT
6. Initial VL (date) 1.1mil
Did not expect my fibrosis level to be increased. I expected it to be the same or, hopefully, improved.
Received no explanation, no advice, no thoughts from my Liver Specialist upon the current Fibroscan results.
Only thing that happened was for another Fibroscan to be scheduled for one year from now.
I requested blood work for a 24 week SVR test but was told no "because I was cured".
I feel like I was left hanging with no help and an increasing problem. I feel like that because I was.
There are a lot of possible causes for a seeming increase in kPa score, such as fasting for fewer hours this time than last, weighing more, operator error (e.g., pinging a rib instead of the liver), operator choosing a different setting.... My first time, they'd had the machine only a week or two, so they hadn't yet learned how to deal with people like me whose ribs are very close together. This third time the gal removed the pillow and had me contort like a banana so she could get the pings between my ribs, and it took her more than ten pings to get ten valid pings. She thought it very possible that my first reading had been too high because some pings might have been of a rib rather than my liver. After my first time (pre-tx), I read a study that recommended fasting for at least 4 hours (the hep doc's office always says 3 hours), so for #2 and #3 I fasted 5 hours, which may have helped lower my score. The middle time (different gal), I commented that I was rooting for a score below 12 kPa; when it came out 12.2, she said there was a setting she could adjust somewhat, that "they" didn't like her adjusting it beyond a certain point, so she adjusted that setting a little, did ten more pings, and got 11.4 kPa.
I hope this confirms what Lynn said about results in mid ranges not being that accurate. Your hepatologist's office leaves a lot to be desired in the "bedside manner" department. If I were in your shoes, I'd probably be feeling like you are. Incidentally, even though my kPa scores have decreased and I had post-tx VLs at 12, 24, and 50 weeks (all UD), my hepatologist (who just turned my liver care back to my PCP) still wants me to have VLs done at 2 and 3 years post-EOT and ultrasounds every six months unless my final FibroScan (in a year) is below 9 kPa. He doesn't expect any problems; that's just his protocol. Is there any chance you can get your PCP to order the 24-week SVR test? Odds are, you're fine, but you'd feel better knowing that the rise in kPa was a fluke.
Good luck,
Gnatty
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There are a lot of possible causes for a seeming increase in kPa score, such as fasting for fewer hours this time than last, weighing more, operator error (e.g., pinging a rib instead of the liver), operator choosing a different setting.... My first time, they'd had the machine only a week or two, so they hadn't yet learned how to deal with people like me whose ribs are very close together. This third time the gal removed the pillow and had me contort like a banana so she could get the pings between my ribs, and it took her more than ten pings to get ten valid pings. She thought it very possible that my first reading had been too high because some pings might have been of a rib rather than my liver. After my first time (pre-tx), I read a study that recommended fasting for at least 4 hours (the hep doc's office always says 3 hours), so for #2 and #3 I fasted 5 hours, which may have helped lower my score. The middle time (different gal), I commented that I was rooting for a score below 12 kPa; when it came out 12.2, she said there was a setting she could adjust somewhat, that "they" didn't like her adjusting it beyond a certain point, so she adjusted that setting a little, did ten more pings, and got 11.4 kPa.
I hope this confirms what Lynn said about results in mid ranges not being that accurate. Your hepatologist's office leaves a lot to be desired in the "bedside manner" department. If I were in your shoes, I'd probably be feeling like you are. Incidentally, even though my kPa scores have decreased and I had post-tx VLs at 12, 24, and 50 weeks (all UD), my hepatologist (who just turned my liver care back to my PCP) still wants me to have VLs done at 2 and 3 years post-EOT and ultrasounds every six months unless my final FibroScan (in a year) is below 9 kPa. He doesn't expect any problems; that's just his protocol. Is there any chance you can get your PCP to order the 24-week SVR test? Odds are, you're fine, but you'd feel better knowing that the rise in kPa was a fluke.
Good luck,
Gnatty
Thanks Gnatty!
I will try with my PCP.
Odd that I called my Liver Specialist to double-check whether I needed to fast or not and if so for how long. They told me that I did not have to fast at all and I ate after leaving work immediately prior to this last fibroscan.
They were aware that I had just eaten.
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SomewhereinTX
I am very glad to hear that. It totally explains the results of your fibroscan. :)
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I wonder how many of us were told to fast or didn't need to fast before a fibroscan.
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I know several people have mentioned about fasting before a Fibroscan but I haven't seen that anywhere in the literature does someone have a reference?
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Lynn, I don't recall whether this commentary on a study is what I saw when I had searched last spring, but it does recommend fasting for at least 4 hours:
http://onlinelibrary.wiley.com/doi/10.1111/apt.12598/full
My hepatologist says no food or water for three hours before.
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Hi Gnatty
Thanks for the research I will check it out :)
yeah no one at my doctors said anything about it
Edit:
Hummm I guess if I do a future Fibroscan I will have to make sure I am fasting then they will think my liver is improved. :)
My pre treatment Fibroscan was 27 and my one year post cure was 33 certainly disappointing. Maybe I hadn't eaten before the 1st one and I had before the second one.
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With my first Fibroscan I had not eaten since early morning and had it done in the late afternoon and as mentioned ate immediately before the second one.
I am seeing suggestions of several hours of fasting prior to testing and commentaries of differences in results in searches.
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Fibrosure blood test for fibrosis requires eight hour fasting prior:
Patient Preparation
Patient should be fasting for at least eight hours.
From: Labcorp.com
So it's not just Fibroscan that requires it. Fibrosure as well.
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I did not at all fast prior to that Fibrosure test last September, and I drank very high calorie drink in dr's office while waiting for the tests including the Fibrosure. So I'm now wondering if my real fibrosis level might not be a bit lower than F3 on account of this?
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Genotype: 1A
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016
Stage: F-0, 5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx
Week 1 Starting VL: 3,044,516
AST: 36
ALT: 63
Cryoglobulinemia: POSITIVE 12.00
Week 2:
AST: 15
ALT: 20
Week 4 VL: 0- UD
AST: 16
ALT: 20
Week 8 EOT VL: 0-UD
AST: 15
ALT: 18
ALKALINE PHOSPHATASE: 66
Cryoglobulinemia: NEGATIVE
Week 12, after EOT: VL: 0- UD
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All these wonderful outcomes make especially good stories. Please tell your hep story at Hep Stories https://www.hepmag.com/category/hep-stories (https://www.hepmag.com/category/hep-stories)
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Just had my 12 week post treatment testing and it came back undetected!!
12 week Harvoni treatment. Treatment was uneventful the first 2 months, but for the 3rd month I had weird skin peeling issues on hands and feet. Perhaps dehydration or something, who knows... but rubbing Avacodo oil on hands and feet seemed to help it heal back up.
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cementjungle, glad to hear your great news -- both the SVR12 and your healed skin.
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Thank you Gnat!!!