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Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Mugwump on August 22, 2015, 03:05:24 pm

Title: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 22, 2015, 03:05:24 pm
I will not be able to post my 24 week results until Nov 2015. There should be some who can post to this thread soon. It will be nice to see a good correlation between 12 week EOT and a cured status. But if there are some relapses to report post 12 week then a thread like this might be a good place to help each other deal with the inevitable disappointment.

Or perhaps it is equally important that we share the joy of being confirmed cured at six months post Harvoni treatment. I know that there were quite a few treatment failures with the older treatments that had post twelve week relapses happen, so if Harvoni proves to knock HCV completely out if you clear at 12 weeks then that joyful tale needs to be told especially for those who relapsed after interferon based treatments. :)



 
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on August 23, 2015, 05:03:49 pm
Hi mugwump.
I just finished 24 weeks of Harvoni.  My 12 week EOT blood work will be the 1st week of November & 24 week EOT the 1st week of Feb. if required.  I see my doctor Sept. 1st and am waiting on my EOT bloodwork.  Now the waiting game begins.  I knew the treatment was working as I was SVR 4, 12 & 16 weeks into the therapy.  Anyone else feeling anxious?
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 23, 2015, 05:46:40 pm
Hi mugwump.
I just finished 24 weeks of Harvoni.  My 12 week EOT blood work will be the 1st week of November & 24 week EOT the 1st week of Feb. if required.  I see my doctor Sept. 1st and am waiting on my EOT bloodwork.  Now the waiting game begins.  I knew the treatment was working as I was SVR 4, 12 & 16 weeks into the therapy.  Anyone else feeling anxious?

I am sure you have it beat. The most difficult is the wait to 12 weeks EOT SVR confirmation! That is the big one. What all of us who failed tx in the past need is assurance that the treatment this time around really did knock out the dragon for good. SO I started this thread for those who fail tx as much as those who succeeded. The real victory thread is the 4 or 12 week post Harvoni thread.

Perhaps another sub section on this forum needs to be considered by the moderators? I suggest a title something like this "Getting our lives back after HCV"  because many will need to learn to deal with not having HCV and we could share our experiences both good and bad. I know that being F4 because of long term hcv is not a quick death sentence but it it is a little to close IMO. So those of us that were blessed and only made it in the nick of time really should communicate about the ways we deal with life after HCV.

Thanks for the response
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on August 23, 2015, 11:20:55 pm
My 24 weeks post date is 10/19

I'll be back

:-)
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on August 24, 2015, 06:38:43 am
Eric,
Good point about dealing with life after treatment.  For so long, I've had to live with this disease and the side effects.  I've had Hep since 1973; diagnosed with Hep C mid 90's.  When first diagnosed it was referred to as Non A-B Hepatitis.  At any rate, it will be a change being free of this disease.  I still have cirrhosis to worry about but my hepatologist, a renowned research doctor, tells me that I am between 1 & 2 on a scale of 10.  I see him Sept. 1st for a follow up and to get more lab scripts.  I will keep posting as it is good for others to listen and share their experiences.
Title: Re: Harvoni 24 week EOT results check in.
Post by: nicole_1234 on August 24, 2015, 10:21:15 pm
Still UNDETECTED 24week post EOT!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on August 24, 2015, 11:50:26 pm
Still UNDETECTED 24week post EOT!

Congrats Nicole!! on your SVR24. I still have to reach SVR4 (test coming up tomorrow) and SVR12. But if all goes well, I will have SVR24 news in late January 2016.

And thanks Mugwump for starting this thread! :)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 25, 2015, 03:13:14 am
There will be many who leave this forum after they clear the virus and I can understand this, many want to try to forget that they ever had the disease. Our posts and experience as the first to be treated successfully and especially those of us who had gt 1a and liver damage, should document how well we recover over the next little while this could become crucial info to encourage others that are just starting this journey IMO  So it is worth the time and effort.

We are not the real HCV heroes, those are the ones who either died trying get treatment or did not make it for any reason. We still have a story to tell and work to do.

So to date we have

nicole_1234 

and

Paleface
who already posted about his 24 post tx result SVR here http://forums.hepmag.com/index.php?topic=3093.0 (http://forums.hepmag.com/index.php?topic=3093.0)
He must have been on shorter treatment to have reached 24 week svr by July 28?

SO

2 for 2 = 100% SVR 24 rate reported for Harvoni so far if you reach 12 week SVR.

This is kickass STUFF I can remember the majority of relapses on interferon were after 12 weeks and many reached 12 weeks only to relapse soon afterward. I know I did! I was <15 at 12 weeks EOT,  then on my 24 week EOT VL was way up in the stratosphere around 11 million so my first tx was a real bummer for me because it almost worked.

The interferon/rib almost worked for me in 2003-4 but the disease and treatment absolutely kicked me in the ass that time around. And it took over a year to get back in the work force and feel decent again! Thank heavens we have lived to see this miracle happen. Were it not for the people who I love pulling for me and even pushing me to go on I doubt that I would have made it to the end of this horror story.


Eric

Title: Re: Harvoni 24 week EOT results check in.
Post by: nicole_1234 on August 25, 2015, 03:50:28 am
I'm rooting for you Kim!

And Eric, docs told me with Harvoni it's different. It's pretty solid 99% at least if you are SVR 12 you will be SVR 24. (Didn't stop me from being anxious about it though).

Let us know how it goes!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Sweetie1 on August 25, 2015, 08:32:11 am
Hi, I just had my 6 month post 12 week Harvoni treatment test last week. Undetected and cured! I hope all of you reading this will have the same result, I think most will. Thank you Gilead Sciences!  Harvoni is one amazing drug. Best of luck to everyone, Karen
Title: Re: Harvoni 24 week EOT results check in.
Post by: Corey on August 25, 2015, 10:37:48 am
My EOT results are in after completing 24 wks UNDETECTED!

My ALT/AST went from 110/140 to 21/16  Dont remember ever seeing them that low.

I contracted HCV in mid 1970s and have a Fibrascan at 3-4
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on August 25, 2015, 12:53:34 pm
Four for four, hooray! CONGRATULATIONS to nicole_1234, Paleface, Sweetie1, and Corey!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on August 26, 2015, 05:13:40 pm
Hi guys
Just got my 24wk post lab back, not detected!

SVR 24  :) :)

Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on August 26, 2015, 05:20:13 pm
YES! CONGRATULATIONS to nicole_1234, Paleface, Sweetie1, and Corey![/b]
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on August 26, 2015, 10:45:29 pm
Eric a big congrats to you too
Title: Re: Harvoni 24 week EOT results check in.
Post by: dragonslayer on August 27, 2015, 12:39:32 am
Hi Mug,

Several of us reached SVR24 and have posted it in the 4/12wk post treatment check in before this thread was ever started.    So, for the record, happy to report here that  I reached mine on July 8.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 27, 2015, 04:21:45 am
Thanks Dragon and Bob. And a big YIPEE to all who have already made the 24 week mark that once was considered the functional cure mark post tx.

KATIE should also be in this group soon as well! If you read this I hope you are finally starting to get your energy back. I know I still have a ways to go but it is definitely getting better each day as my liver slowly recovers. I just hope the flu shot this year is a little better than the last one though because I think catching a case of the galloping crud during the last 3 months of my treatment definitely messed things up for me to some extent.

Dragon,  I am fully aware of the stats regarding 12 week UND on the Harvoni trials. Part of the reason why I think this thread is good is because as time goes on some of us that had more liver damage really need to communicate.

Harvoni though a breeze as a treatment did really slow me down in the last part of the 24 weeks. So I guess the fight to save what is left of the liver is a very important part of the equation. This is why I think that a forum section for "life after HCV infection" might be a good idea. Harvoni has changed the equation and many of us that have suffered a high level of liver damage need to discuss how we deal with it long term because most of the medical community has not seen people in our circumstance before recover from HCV.

For instance my bilirubin is still elevated and I need to find out why and what I can do about it. All these things will be new to everyone because up until now it was quite rare for F4 liver patients to recover or be cured with GT 1a.

Thanks for the encouragement everyone.

Eric


Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on August 27, 2015, 10:26:40 am
Eric
Good points.
 The 12wks I was on Harvoni sure slowed me down. I think what's different for me then some of the others was I felt fine before treatment. Two days post treatment I felt like a new person again but to be honest I think it was just that I felt so much better then I did on treatment. My endurance has been very slow to come back so I know know the Harvoni affected me more then I originally thought. On the good side I'm starting to get back to my pre tx endurance now.

I think your suggestion about where to go from here is a good one, especially for the people who have more advance liver issues.

Paul
I was thinking about you yesterday, congrats buddy.
Title: Re: Harvoni 24 week EOT results check in.
Post by: dragonslayer on August 27, 2015, 04:54:15 pm
Eric, I dont think Katie's posted in about 10 days now which is unusual for her.. She should be reaching SVR24 real soon now, so Im surprised shes been so quiet.. Hope things are ok with her!
Title: Re: Harvoni 24 week EOT results check in.
Post by: dragonslayer on August 27, 2015, 04:54:43 pm
duplicate post; text deleted
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 27, 2015, 05:07:09 pm
Eric, I dont think Katie's posted in about 10 days now which is unusual for her.. She should be reaching SVR24 real soon now, so Im surprised shes been so quiet.. Hope things are ok with her!
Yes this is not like her, hope she is fine. The one individual who has not posted to the forum for a long time that concerns me the most is Meredith. I hope she is fine, she was doing so well and all of a sudden no more communications. But I guess that is just the nature of the net these days. Perhaps as soon as she cleared the virus she wanted to forget she ever had it and I can't say as to I blame her!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on August 27, 2015, 08:06:11 pm
Katie has posted a couple of times today

http://forums.hepmag.com/index.php?topic=1653.msg27326#msg27326

Do you know Meredith's screen name? I tried to look her up by Meredith but no luck

Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 27, 2015, 10:38:27 pm
Katie has posted a couple of times today

http://forums.hepmag.com/index.php?topic=1653.msg27326#msg27326 (http://forums.hepmag.com/index.php?topic=1653.msg27326#msg27326)

Do you know Meredith's screen name? I tried to look her up by Meredith but no luck
Amj1951 and I see the profile is still active but she is not posting I really hope all is well with her and she is just waiting for the SVR joyful news like many here!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on August 29, 2015, 07:47:35 pm
I just LOVE how you all are concerned about me and keep tabs!  That is very touching.   :-*

I have a bit of a dilemma happening as my doctor of 27 years is closing up his office.  He had some medical issue and hasn't been in the office since end of March so he wasn't around when I finally cleared the virus.  I did send him a card a few weeks ago to tell him the good news as he was so upset and confused when I came back detected at the EOT,  He has been very important in our community, is an excellent doctor and someone I trust completely.  One of a kind.  I am just hoping he is OK, but I really need a doctor.  He sent a very emotional letter out, which I just received this week and did provide a list of doctors but several are not taking new Medicare patients, so I have been trying to sort all that out.

We are a small community here, with a good hospital, but it is difficult to find a long term family doctor as the turnover is high. 

I am feeling better, little by little, and other than being exhausted all of the time my big concern is my joint issue.  Wouldn't you know it, the first decent orthopedic doctor we have ever had left this month as well, so I am feeling a bit deserted!  I need to take care of this as my mobility is getting more compromised.

So don't worry about me as I am doing OK and just focusing on health care providers at this time.  I will return, hopefully full of vinegar and a Happy Dance for everyone.

Thanks again for looking out for me!

Katie
Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on August 29, 2015, 07:49:00 pm
Free and clear and no longer a Bio-Hazard!  Yippppeeeee!

GT 1a
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2015 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)

(https://farm6.staticflickr.com/5720/20942527756_708ff55750_z_d.jpg)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on August 29, 2015, 10:17:27 pm
Katie
Congrats it's such a wonderful feeling to be HepC free.

PS. Love the pic.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 30, 2015, 12:41:31 am
Keep smilin' Katie! I hope to chalk it up to 24 weeks in Nov. But my enzymes are climbing. AST hit 43 and ALT is at 50. So I am sitting on pins and needles. I see the GI on the first of Sept and my 12 week post tx was undetected so most likely the spike in my reading is due to the case of the crud that both my wife and myself are currently going through.

I did pick up one hell of a cough that my wife brought home from work. It started out like the mumps with a tingle in the back of the throat and then spread to the lungs. I almost took my wife into emerg about 2 weeks ago it is a real 'turd and  caught many here by surprise. I have been coughing and finding it hard to breath for about 2 weeks non stop.

NO FUN AT ALL. The same bloody thing happened at 15 weeks into Harvoni when my wife brought home the flu that escaped the vaccine this year! She works in the Hospital and it is a horror show how the people who work there are at terrible risk for every bug that goes around. There is no escaping it.

However it goes I am going to sneak out and go fall chironomid fishing, I don't care if I freeze in my tent! I am going to give some more fish "sore lips" before I have my next VL test done.

Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: nicole_1234 on September 04, 2015, 03:38:56 pm
Yeah! Katie!! Big congrats to you!!!!

I'm getting a Fibroscan today and I'm a bit terrified. Hope theres very little scaring and I can just move on from this illness once and for all. I don't know why they didnt do this test before my treatment.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on September 04, 2015, 07:28:04 pm
Nicole_1234
Good luck with the scan.
Title: Re: Harvoni 24 week EOT results check in.
Post by: nicole_1234 on September 04, 2015, 07:56:30 pm
 thanks Bob!

 I posted this on another thread perhaps you can help ( of course I can always wait until next week to get an official rundown from my doctor)

I just did a Fibroscan and the nurse said I would have to wait for a week to get results from my doctor. But can anyone perhaps ease my wait by telling me if they know acting about the image I saw from it?

On the right hand side there were numbers next to 10 images all saying 1.2 to 1.8

In the middle was

VS Median 1.36

And below the

E median 5.1

Is the 5.1 my score?
Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on September 04, 2015, 07:59:09 pm
Thanks Nicole, and no matter what the scan results, your liver is healing and improving.  I asked about a Fibroscan and my doctor said it wasn't needed as my ultrasound looked good.  I believe the scan is only accurate if you have progressive scarring.  I don't remember what condition your liver is in?

Good luck girlfriend.  It always puts a smile on my face when you post! (you too Bob along with others in our start up group)

Katie
Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on September 04, 2015, 08:04:50 pm
Nicole:  Look what I found and it appears that you are fine...If these are the numbers you noticed.  The card picture wouldn't copy on this but the info is easily understood.  This is GOOD news for you!!!    ;D :-*

Fibroscan scoring card

Keeping this in mind, we can use the Fibroscan scoring card to convert  Fibroscan results measured in (kPa) into the Metavir scale F1-F4.

Located on the bottom of the Fibroscan scoring card is Fibroscan results in (kPa) measurements 0-75, more accurately Fibroscan results range from 2.5 kPa to 75 kPa. Between 90–95% of healthy people without liver disease will have a liver scarring measurement less then 7.0 kPa (median is 5.3 kPa).

A person with chronic hepatitis C and a liver stiffness more then 14 kPa has approximately a 90% probability of having cirrhosis, while patients with liver stiffness more then 7 kPa have around an 85% probability of at least significant fibrosis.

However,  research has shown Fibroscan accuracy in assessing lower degrees of liver fibrosis (F1-F2) is not as reliable compared to diagnosing advanced fibrosis and cirrhosis (F3/F4)
- See more at: http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html#sthash.u18PK6hC.dpuf
Title: Re: Harvoni 24 week EOT results check in.
Post by: nicole_1234 on September 04, 2015, 08:10:09 pm
Thanks so much Katie!

 Yeah that's what I'm wondering if the numbers I was looking at actually are the score or something else that I didn't understand. But it looks promising because even the higher one of 5.1 which is still less than 7 so that looks good!



Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on September 04, 2015, 08:22:46 pm
Thanks so much Katie!

 Yeah that's what I'm wondering if the numbers I was looking at actually are the score or something else that I didn't understand. But it looks promising because even the higher one of 5.1 which is still less than 7 so that looks good!

and you are also below the median of 5.3.  I am sure this is the correct interpretation.  Here is the site I found and if you GOOGLE Fibroscan numbers there is a lot of information out there.

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

You ROCK Nicole!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on September 04, 2015, 10:50:33 pm
Hi Katie and Nicole.
Nicole I know nothing about the scans but Katie saved the day. Sounds like your # are good, congrats. Let us know when you get the official results.
Title: Re: Harvoni 24 week EOT results check in.
Post by: nicole_1234 on September 11, 2015, 02:59:50 am
Thanks Bob and Katie. Doctor confirmed I have no liver damage. What a weird, painful and yet somehow wonderful journey I've been on! I feel so lucky to have come out alive (my father actually had Hep C too and died from it at age 67 about 10 years ago)

It's been a long hard road carrying this virus around for 15 years, but I'm free at last and all the wiser,stronger and more grateful for life and all its twists and turns because of it.

Thank you both for and anyone else on this site in helping me through this last little part of it. It's meant so much to have your support.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 12, 2015, 12:42:49 am
Hello to The wondering masses that have experienced the LOWS from inadequate hard knocks of past treatment protocol. I kind of figured it would be the almighty dollar that would force the day to Drug companies to invest in us.

Some 30 years later, which I suspect to be my infection duration. Numerous trial failures later with Interferon & Ribavirin in early clinical. Actually never finished combination old therapy. Had to stop before they killed me. Enzymes lapsed into the high 500 counts at that trial. Have Cirrhosis. Started Harvoni 24 week therapy 1st of April. Taken last pill today. SVR at 12 weeks. Will draw labs next Monday. Should be able to report in a week later or sooner. I pray for peace.

Looking forward to results and Blogging with you all!
Title: Re: Harvoni 24 week EOT results check in.
Post by: dragonslayer on September 12, 2015, 09:38:20 am
>>Taken last pill today. SVR at 12 weeks<<

Snuff, congrats on completing therapy.. Just a correction on terms..

SVR is  Sustained Virologic Response..   It is a term used to apply to Undetected status achieved Post Treatment  at specific finite intervals.. SVR4, for instance, means one had a blood test yielding a viral load that is Undetected 4 wks post treatment, etc, etc.

Therefore, it is impossible to be SVR 12 wks into a 24 wk treatment regimen.. In these cases, Undetected is not the same thing as SVR.

Best of luck as you move forward to those key SVR markers post treatment!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 12, 2015, 09:59:21 am
dragon, Yes I was undetectable at 12 weeks.  I did have a lab request for the 4th week, which I forgot to fill. I guess between all the anxiousness to get started & leaving my winter stop in FL. headed back North, I just missed the lab.

Head of Liver Management suggested that in my condition while achieving undetectable viral load at 12 weeks bolds well for me. They and I were pleasantly surprised. And they suspected I would achieve continued clearance. Hoping this to be true and allows myself a 2nd chance to heal the non-fibrosis portions in replicating new cell structure.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 12, 2015, 10:01:59 am
 
dragon, Yes I was undetectable at 12 weeks.  I did have a lab request for the 4th week, which I forgot to fill. I guess between all the anxiousness to get started & leaving my winter stop in FL. headed back North, I just missed the lab.

Head of Liver Management suggested that in my condition while achieving undetectable viral load at 12 weeks bolds well for me. They and I were pleasantly surprised. And they suspected I would achieve continued clearance. Hoping this to be true and allows myself a 2nd chance to heal the non-fibrosis portions in replicating new cell structure. So hoping the 24 week lab will result in SVR, Which would qualify the status to Post condition by a few days. Thanks dragon.
 
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on September 12, 2015, 03:16:03 pm
Hi and welcome

So when you say "hoping the 24 week lab will result in SVR" I am still not sure what you mean.

As Paul said SVR is after treatment has ended. SVR is a sustained viral response. So there is on treatment testing which may occur at weeks 4, 12 and 24 EOT (end of treatment) and then further testing post treatment for either SVR or possible relapse. Those times might include a test at 4, 12 and 24 weeks post treatment looking to see if you have achieved SVR 4, SVR 12, and SVR 24.

If you are still free of the virus at 4 weeks post the probability you are cured is about 98.5% and if you make it to still not detected at 12 weeks post that is a 99.8% probability of cure which most but not all doctors call cured some still prefer to wait for SVR 24 to declare you cured.

Good luck with your treatment
Lynn
Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 12, 2015, 07:57:31 pm
Well maybe I was not clear enough. But what I am saying is I have completed the 24 week regiment of Harvoni this past Friday. $190,000 of Harvoni value later. I am about to receive my first lab test at completion, this coming Monday to confirm still undetectable. As I was also undetectable 12 weeks into therapy.

Yes I realize I have an additional POST lab to complete to reach a comfortable SVR, be it 12 additional weeks or 24 weeks POST as suggested on this forum.

Now I also have been consulted by U of M Liver Management team. And as I am aware right now as stated to me, shall I be 12 weeks POST SVR. I would be considered cured. Is there suggestion by any others here that we must adhere to a longer POST SVR all the way out to 24 weeks?

Note I have not been requested to do SVR Labs 4 weeks POST, only 12 weeks. Is this common for most? As I noted it seems some of you are suggesting 24 weeks POST for real cure? What are the published POST duration qualifier, or is it still subjective to whom may be treating you?
Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 12, 2015, 08:28:19 pm
OK a little research and possibly answered my own question. From BC Center for Disease Control: http://www.bccdc.ca/NR/rdonlyres/78F4E7D9-5BF2-4410-BDEE-ED31AADF0A2A/0/CPS_HepatitsC_ViralLoad_Rec_20150609.pdf

o A viral load at 12 weeks post completion of all treatment should be done to determine if a SVR has been achieved. Viral loads obtained 12 weeks after treatment have been shown to be essentially equivalent to a 24 week viral load assessment for SVR (Yoshida et al. Hepatology 2015).

o A follow up viral load performed at 24 weeks after completion of all treatment may identify approximately 0.5% of individuals who are late relapsers. Performing both a week 12 and a week 24 post treatment completion viral load assessment to verify SVR is appropriate.

I guess I will have that discussion with my Doctors.....

Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on September 12, 2015, 09:47:39 pm
OK a little research and possibly answered my own question. From BC Center for Disease Control: http://www.bccdc.ca/NR/rdonlyres/78F4E7D9-5BF2-4410-BDEE-ED31AADF0A2A/0/CPS_HepatitsC_ViralLoad_Rec_20150609.pdf (http://www.bccdc.ca/NR/rdonlyres/78F4E7D9-5BF2-4410-BDEE-ED31AADF0A2A/0/CPS_HepatitsC_ViralLoad_Rec_20150609.pdf)

o A viral load at 12 weeks post completion of all treatment should be done to determine if a SVR has been achieved. Viral loads obtained 12 weeks after treatment have been shown to be essentially equivalent to a 24 week viral load assessment for SVR (Yoshida et al. Hepatology 2015).

o A follow up viral load performed at 24 weeks after completion of all treatment may identify approximately 0.5% of individuals who are late relapsers. Performing both a week 12 and a week 24 post treatment completion viral load assessment to verify SVR is appropriate.

I guess I will have that discussion with my Doctors.....
Much of the svr confusion is because the older treatments had much higher failure rates post treatment. Many who were undetected at end of treatment would relapse after various periods of time. The most common was a quick relapse after 4 weeks. So the standard of testing became in 4 week intervals. But there were also many who went for 12 weeks and then suddenly relapsed but very few who relapsed after 24 weeks post treatment. Less than 1% of patients who reach 24 weeks relapse regardless of which treatment they were on.

This is not the case with Harvoni. So the testing post treatment seems to vary because of the way testing was done prior to Harvoni. I am fortunate because my GI has written me a 24 week post treatment requisition for me, but because my 12 week post treatment test was undetected then I have better the 99% chances of not having a relapse. So there is very low probability that I will relapse. The facts that you linked to are the most current statistics but most of the clinicians agree that until a greater cross section of the population gets treatment with Harvoni we should be cautious and still perform the tests the way they were done for older treatment regimes.

I suspect that as this treatment becomes more common then 12 weeks of svr post treatment will become the point at which specialists declare the individual cured but it makes sense not to jump to this conclusion until more results come in for people who have been treated for 24 weeks with Harvoni in the general populace.

You are undetected at end of treatment and that gives you a better than 96 percent chance of reaching 12 weeks without the virus returning. I will take those odds in Vegas any day of the week!

Congratulation on snuffing out the dragon and all the best in healing the damage it did.

I am just discovering the extent to which my rock of a liver has been effected. My fibroscan was 25 so there is quite a bunch of damage done and being F4 means that most likely my quality of life will suffer.

Little things like not being able to climb up and out of river canyons the way I did only a few years back. But I am going to push the limits again now than I am free of the bug! I will not roll over and blame everything on HCV and a bum liver or sit around and mope.

Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 12, 2015, 10:20:04 pm
Thanks Mug

I kind of rationalized that was the case to look back to the old clinical protocol until more subjects on Harvoni were past the 6-month post.

Similar Liver damage as you, but I will fight through it. Not yet willing to roll over or grasp for excuses. Got too much Living to catch up with...........
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on September 13, 2015, 06:09:57 am
Some get checked at 4 weeks post most don't I asked to be tested at 4 weeks because of my treatment history and especially because I relapsed last year after being not detected while taking Sovaldi and Olysio for 12 weeks but was found to have relapsed at the 12 week post mark.

To me it seems the doctors who are up to speed with the new treatments are more inclined to call SVR 12 cured but as was said the old treatments were not considered cured until SVR24 so many still hang onto that.

I am going to be tested at week 24 post because of my history we just really want to make sure I am really cured.

Good luck
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mike2 on September 13, 2015, 07:28:35 am
Hi All,
12 weeks post Harvoni Geno 1 CURED!!!
Good luck to all!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on September 13, 2015, 10:46:39 am
Bravo, Mike2!  Have a GREAT life!
Title: Re: Harvoni 24 week EOT results check in.
Post by: mario555 on September 14, 2015, 05:34:07 pm
Mugwump. It was funny to read about your ability to "climb out of Canyons and stuff... I had similar problems where I told my wife I was expecting a healthier life after being declared SVR 12. She mentioned that I am old! (older?)
My life over the last 15-20 years revolved around my disease. All my ailments were from the disease (or so I thought). I forgot about my growing older and the decrease in physical strength that went with it... I just turned 60 and I can't climb out anymore, my strength and muscle mass has decreased and I have to figure out the rest of my healthier life. So don't worry too much, take the well travelled path, it's less risky! (ha, ha!)
On another subject, I was still bothered by tinnitus 20 weeks post treatment. 5 days ago, I flew 18 hours on 4 differentsegments in a long trip. Lo and behold, my tinnitus is f...ing gone! A 100% cure! I am left with a minimal amount of dizziness and that's it! Have I found a cure for tinnitus?
t
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on September 14, 2015, 06:13:52 pm

On another subject, I was still bothered by tinnitus 20 weeks post treatment. 5 days ago, I flew 18 hours on 4 differentsegments in a long trip. Lo and behold, my tinnitus is f...ing gone! A 100% cure! I am left with a minimal amount of dizziness and that's it! Have I found a cure for tinnitus?
 
That is great to hear!

OH that was bad!!

I am not going to give in to OMS (old man syndrome). I am finding the tinnitus comes and goes and increases with sinus problems but it has backed off to the point where it is no where near as bad as it was for the last few years. I remember flying all over Northern Ontario years ago when I worked for the MNR there in my twenties. It was in an old DC 3 and it took me quite a while to be able to hear properly again. So series of pressure changes definitely can effect the inner ear long term.

Perhaps the process of  pressure changes to the ear helps to stimulate and strengthen blood flow to the membrane the same way exercising the muscles do. You might be onto something, it would be really interesting to do experiments to quantify the changes and see if it is actually possible to "exercise" your ears! I know that if I blow my nose a few time carefully the tinnitus eases off for short periods of time so there most likely is something to it.

Cheers
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: Deborah on September 19, 2015, 08:52:37 am
Cured!  Diagnosed in 2008, did 8-wk treatment of Harvoni and finished 2/15.  Undetectable since wk 4.  Just got labs for 6-mo post treatment (SVR 24), still undetectable and doctor declared my treatment a success.  Now the word is mine - cured!    ;D

Geno 1
age 61, female
no liver damage
enzymes normal throughout
no other treatments done
no major side effects to Harvoni

Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on September 19, 2015, 11:33:19 am
Keep rockin' Deborah! It is great to see those who went through only 8 weeks go on to SVR 24.

Us poor characters who have greater liver damage seem to have more of a rough go of it. But knowing that others will never reach the F4 status due to this horrendous disease because there is the potential to cure HCV early on before it does serious damage is a wonderful thing.

I am still having a bit of a hard time, my joints ache and the last bug that got me almost put me into the hospital with pneumonia. But I am not going to call this side effects because I have a liver which is cirrhotic and hopefully over time it gets a little better. But there is still some discomfort and biliousness going on so I will just consider myself to be a bilious ol' fart and leave it at that!

All the best in your future life without HCV, big  :) :) and hugs
Eric



Title: Re: Harvoni 24 week EOT results check in.
Post by: Snuff HEP on September 22, 2015, 01:10:06 am
SVR at 1 week post of 24 week treatment. Received Lab results today....Undetectable. Next milestone Post 3-months lab in Dec.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on September 22, 2015, 03:21:05 am
Right on Snuff!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on September 22, 2015, 08:58:38 am
SVR at 24 weeks. Received Lab results today....Undetectable. Next milestone Post 3-months lab in Dec.
That is wonderful! It has been a long a difficult road for those of us who needed 24 weeks of tx. I am sure you will see svr 12 and cured!!! The waiting is really hard and I completely encourage you to growl, grumble, fart and in general be nasty until you finally hear the words CURED.

It does not really help things to go faster but sometimes pitching a rock through a window is the best solution IMO. But be nice to the ones you love and yourself.

Let us know how you get along as you get over the treatment, I am having a bit of a rough go of it but at least I can finally see an end to feeling like crap all the time the way I have for years because of compromised liver functions.

All the best
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: hkillinger99 on September 29, 2015, 10:25:06 pm
Tomorrow I am going for my 12 week post Harvoni blood work.  Hopeful that all will be clear and this day seemed to take FOREVER to get here.  I am feeling better, bit by bit, with less exhaustion than before.  Unfortunately, my RA seems to be raging as well as a significant decline of my eyesight.  Likely not harvoni related, simply age related (only 43).  I am grateful to everyone here who continues to share their hope and as soon as I have the results, I will be back.  Live well and be blessed!

Heather
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on September 29, 2015, 11:29:49 pm
Tomorrow I am going for my 12 week post Harvoni blood work.  Hopeful that all will be clear and this day seemed to take FOREVER to get here.  I am feeling better, bit by bit, with less exhaustion than before.  Unfortunately, my RA seems to be raging as well as a significant decline of my eyesight.  Likely not harvoni related, simply age related (only 43).  I am grateful to everyone here who continues to share their hope and as soon as I have the results, I will be back.  Live well and be blessed!

Heather
Heather I strongly suspect that as our liver becomes free of HCV it is also stronger and produces more hcv antibodies. This could very easily explain why some of us are experiencing strong post treatment rheumatic effects. I have had pronounced myalgia, pain in my shoulder joints, and noticeable negative effects upon the quality of my vision. And some more pain in my swollen finger joints especially in the cold. BUT it is currently easing off and I am back at playing my musical instruments (classical guitars) with more ease and much less strain and pain!

My glasses are not quite good enough for reading any longer but I will wait until I am at least 6 months post tx before I renew my presciption! My eye sight was deteriorating even before I went on Harvoni in late November 2014 so my six month post 24 week tx is not until Nov 3.

All the very best reaching SVR 12 girl!!!! I am sure you are going to make it. The waiting till you hear the words UND at 12 weeks post treatment is the hardest part by far of this treatment. , I know I was quite short tempered during this period and had to do things to release the tension. Above all be nice to yourself and all those you love!

Like I have said to others throwing a fit or doing something off the wall does nothing to help shorten  the waiting but anything that might release a little tension at this time is really important. I know if I had not rebelled and gone fishing and snubbed my nose at some people the waiting would have been much worse. However do not get too mad at others if they seem to be less than understanding about what you are experiencing. They certainly cannot understand what it is you are going through and quite often telling them will just make them bored because they truly do not understand.

I was excited to tell others that I was UND at EOT (undetected at end of treatment) in fact I wanted to shout out loud and sing about it. That is why this forum is great we all understand what we are all going through.

What did happen however was a downer when I told some people who were less than understanding and my excitement brought out some detractors that accused me of being high on something, some people can be complete jackasses at times, especially about this disease they assume you use drugs and write you off as a person!

However

NO PROZAC FOR THIS CAMPER PERIOD even though some others have suggested I should go on it!  ;) Or with my new found spunk and enthusiasm for life ask me if I forgot to take my downers. But I have good come backs to this, but most times just thumb my nose at the comments considering the source of these comments are mostly from people who are walking downers ::) . I just tell them " I don't need to take a downer, I just met one!" and then walk away.

All I am saying is don't let the wait get you down or let the usual downers get to you! You deserve the peace of mind that final freedom from this disease can bring, as do we all.

Hugs from afar and I truly hope your symptoms post tx are easy to deal with and they dissipate rapidly and you can become young at heart again like I have!
Eric
 
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on September 30, 2015, 06:10:16 am
Well said, Eric. And good comeback to the people who think you should take downers. I may 'borrow' that one myself for certain people. ;)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Momof3 on October 02, 2015, 04:33:23 pm
24 weeks post Harvoni.... Undetected!! CURED after only taking Harvoni for 8 weeks! What a ride!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on October 02, 2015, 04:47:26 pm
24 weeks post Harvoni.... Undetected!! CURED after only taking Harvoni for 8 weeks! What a ride!

Fantastic, Momof3. Congratulations! And tremendous that you were able to do it in just 8 weeks of treatment. Enjoy your New Life. :)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Momof3 on October 02, 2015, 04:56:09 pm
Thank you kimintheforest! It amazes me that I did it in 8 weeks vs when I first looked into treating. I am so glad I did my research and chose the gamble to wait!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on October 02, 2015, 05:00:54 pm
 Hooray for You Momof3. Great news for sure. Trusting in Your instincts usually pays off. In this case , wonderfully!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on October 03, 2015, 02:18:07 am
Momof3 it is wonderful to see those who have not progressed very far in the disease clear the virus. Even more so to know that you will not spend the rest of your life constantly worrying about infecting others.

Others who are not infected cannot know about the inner voice we have that grabs us every time we have a little cut or have intimate contact and the list goes on. They cannot know what it was like to fear a misstep or accidental transmission of this disease.

So for us it will be difficult to distance ourselves from having the virus, there will be flash backs and memories of the torments of concern that ruled our lives. Getting over having had the virus is a new task that many of us with this strain of HCV thought we would never have to deal with.

I wish you peace of mind and joy in the knowledge that you do not have to be constantly worried about infecting others any longer especially the ones you love the most!

As a father who had HCV the constant worry about infecting my wife, child and others ate at me for so many years that it became like a millstone around my neck.

All the best
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: hepboy1 on October 08, 2015, 11:38:44 am
hello to all im wondering to those suffering side effects   or not post  harvoni are any  of you taking supplements ?I just started and was trying to see if coming out the back side taking some cleansings or herbs   might hasten recovery                               infected 1991?  hep c no 4   viral load  86thousand   stage 4 cirrhosis  started harvoni 2 hours and 8 minutes ago
Title: Re: Harvoni 24 week EOT results check in.
Post by: marybarter on October 08, 2015, 02:56:30 pm
My doctors did not allow me to take most supplements.  It's important to ask the Specialists because some of those herbs, etc., interfere with the efficacy of Harvoni.  Further, there is a list of herbs that are harmful to the liver.
Title: Re: Harvoni 24 week EOT results check in.
Post by: mario555 on October 08, 2015, 04:15:31 pm
Hepboy1. Really sorry to intrude but why in hell would you take anything that could interfere with Harvoni? If there would be herbs or whatever that could better the treatment, don't you think Gilead would have added it to their pills already? For the makers of this medication, it's a fight to death with competitors! If anything better could be added, they'd do it!!
They say to take the pills wwith a normal diet and they warn you about interactions with some "herbs" that might interfere. A normal diet forAmericans is hamburgershamburgers, Sheppard pies, apple pies, etc... What you are risking in introducing herbs is to relapse and then,your up the creek without a paddle!
Do as they say and keep busy and let the pills do their work. Don't interfere!
In any case, I did 24 shitty weeks and thank you Lord, it seems to work with my SVR12. Good luck to you with your treatment and be patient and go have a pizza on me!
Title: Re: Harvoni 24 week EOT results check in.
Post by: hepboy1 on October 08, 2015, 06:09:42 pm
IM WANTING TO HERE FROM ANYONE WHO DID TAKE SUPLEMENTS AS WELL SO FAR IVE FOUND 2 WHO TOOK MILKTHISTEL WITH HARVONI  BOTH HAVE  BEEN CURED BOTH CLAIM NO OR LITTEL SIDE SFFECTS , ONE SAYES THEY WERE NEGATIVE THREE WEEKS OUT,  SO LETS JUST SAY IM DOING RESEARCH  OH  IT WOULDNT MATTER IF EATING DOG POOP CURED YOU IN ONE DAY THEY WILL NEVER TELL YOU AS LONG AS THEY GET 12OO A PILL  FOR THEIR ELIXER   sorry my cap locked  wasn't angry  I just see how so many after they are cured end up with a rash of problems (new ones) out of th e frying pan into the fire  im ganna do what I gotta do to avoid that , who wants to get cured just to get billary tumors  or memory loss or crippling back and leg pains ?  or endless fatigue? if all one needs is a little milk thistle to clear some of the rubble out or protect a little? im just looking for a third person to come forth and admit they took their thistle  during treatment  sides if it didn't work or threw a wrench in things the first test would show so far it looks promising  not that I would encourage anyone to go a differing direction  just trying to hook my self up with an edge  I don't need to be turded out  after the cure
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on October 08, 2015, 06:28:25 pm
 Personally, I stopped ALL supplements during 12 week treatment to give the Harvoni every chance needed to do its job. Had some bad sides but persevered with only a few Advil & Aleve to combat the Migraines and joint pains. Small price to pay when You think about the possibility of interfering with these high cost meds. and the problems so many have had getting them. Just finished My 12 weeks waiting to get My EOT blood work done next week. I will worry about supplements later. Your best source of info. is usually the specialty pharmacist on info. & recommendations for what to take or not to take. Be sure it is the specialty PHARMACIST that You talk with. Most regular pharmacists are not versed in the ways of these antivirals we are taking.
 Good Luck & Best Wishes on Your treatment.
Title: Re: Harvoni 24 week EOT results check in.
Post by: hepboy1 on October 08, 2015, 06:52:04 pm
thank you be blessed and healed
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 08, 2015, 07:46:08 pm
Hepboy1
there is no evidence of efficacy of any herbal "treatment" including milk thistle. you are just throwing money away it does nothing.

The recommendation is if you don't HAVE to take something while on treatment don't take it.

What you do afterwards is your choice but please don't mess around with your treatment
Title: Re: Harvoni 24 week EOT results check in.
Post by: hepboy1 on October 08, 2015, 09:58:10 pm
there are 2 on here who did take milk thistle all the way threw treatment  one viral load zero in three weeks  the other also zero and  after treatment  one had no side effects the other minimal , no post punishment symptoms  I think they are on to something but you cannot kno unless someone sacrifices , look how everyone has these endless after  post symptoms im beginning to  think the dosage is too much for some people who cant clear it fast enough  just from reading so many stories  but im no doctor   im only concerned anyway about me making it threw im a hypersensitive  with old detox damage  from over dosing  on Tylenol 
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 08, 2015, 10:32:32 pm
Personally I had few side effects from treatment just became rather anemic from the Ribavirin which resolved in 10 days after stopping the meds and I have no remaining sides from treatment I feel fine as a 57 year old with cirrhosis.

It is each individual's experience based on their own health and sensitivity you present no evidence of any effectiveness totally anecdotal and those folks I believe would have had no different experience with or without milk thistle

The people who post in a discussion about post treatment issues of course that is what you will see there. But the majority of patients have little to no posttreatment problems and for those who do it is more a result of their medical condition than from the medications for the most part.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on October 08, 2015, 10:35:38 pm
hepboy1:  I took milk thistle regularly for 10 years along with other liver helping supplements and had no noticeable liver damage from Hep C so I think they worked in protecting my liver but then I have no control for certainty.  I eliminated all supplements except my Vit D as I am right on the low edge and it took a lot of work to get it up to that level.  I also took a vit B complex as needed but rarely took it while on Harvoni as I felt so good during treatment.  I would be extremely cautious with any kind of supplement blends such as herbal tea or liver or gallbladder flushes etc as it may have something, such as St John's Wort that will interact with Harvoni.

We each do what we need to but I would run it by your doctor and/or your pharmacist before doing something which could compromise your treatment.  Be sure to stay hydrated.  I think that is a key.  This treatment affects everyone differently, so I wouldn't assume what worked for one would work for all.

Good luck, be good to yourself and keep us posted!

Katie

Title: Re: Harvoni 24 week EOT results check in.
Post by: Katie on October 08, 2015, 10:43:17 pm
Actually Lynn, I am in perfect health and take no prescribed medication, had an easy time, in fact GREAT time during treatment and now feel worse than before treatment in many ways.  Some issues are gone but my energy level is half of what it used to be and I do place it on post treatment.  My liver isn't damaged, my thyroid is in good shape and they even tested me for toxicity, for everything.  BP, lung function, O2 level, kidneys, everything is perfect except some of my joints which I damaged doing hard physical work.

I have always been really sensitive to any medication and rarely take anything, including over the counter) so I just think it affected me in a different manner and know it will balance out over time.

Glad to hear you are doing so well.  You had a difficult treatment history and are a strong lady whom I admire!

Katie
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 08, 2015, 11:03:27 pm
Yeah we all react differently to meds and a few do appear to have had a reaction to these newest treatments like yourself some have pre exisying conditions known and sime nay have been the and unknown and some like you are sensitive to medication in general but I believe for most that is the exception.

Hope you get to feeling better soon I just wish they had invented Harvoni in the 90's before I had cirrhosis but it is what it is and life goes on :-)
Title: Re: Harvoni 24 week EOT results check in.
Post by: teasker on October 24, 2015, 08:11:21 am
Good Morning-Just thought i would chime in with my experience
Age-53-Male
Diagnosed-1990
TX naive
Started Harvoni-1/26/15-8wks of tx
1.5 mil viral load
4 wk-Detected but less then 1.8 and less than 15 for Quantatative & RNA
12wk-undetected
24 wk-undetected

I experienced no side effects during tx or after. 
I live in WI and when i called my insurance company to thank them for allowing Harvoni they were kind of shocked and said "Why wouldn't we allow it?"  They indicated the would authorize the medication for anyone who has the disease even if just diagnosed yesterday.  They do NOT want folks to get any sicker then they already may be.  They really seem to get it that paying up front for Harvoni is cheaper in the long run.  I have Security Insurance. 

I was pretty luck in that I only have level 1 scarring.  I suspect no alcohol for the past 20 yrs helped.  Well wishes to all my brothers and sisters of the struggle!  Tim
Title: Re: Harvoni 24 week EOT results check in.
Post by: dragonslayer on October 24, 2015, 10:01:59 am
Good Morning-Just thought i would chime in with my experience
Age-53-Male
Diagnosed-1990
TX naive
Started Harvoni-1/26/15-8wks of tx
1.5 mil viral load
4 wk-Detected but less then 1.8 and less than 15 for Quantatative & RNA
12wk-undetected
24 wk-undetected

I experienced no side effects during tx or after. 
I live in WI and when i called my insurance company to thank them for allowing Harvoni they were kind of shocked and said "Why wouldn't we allow it?"  They indicated the would authorize the medication for anyone who has the disease even if just diagnosed yesterday.  They do NOT want folks to get any sicker then they already may be.  They really seem to get it that paying up front for Harvoni is cheaper in the long run.  I have Security Insurance. 

I was pretty luck in that I only have level 1 scarring.  I suspect no alcohol for the past 20 yrs helped.  Well wishes to all my brothers and sisters of the struggle!  Tim

Teasker, I had a similar experience to yours.  Stage 0-1 by biopsy, treatment prescribed for 8 wks, minor to no side effects, and quick insurance approval with no appeals needed.

I think its the luck of the draw whether you get an 'enlightened' insurance company who sees the benefit of keeping overall costs down by treating on-demand rather than waiting until more irreparable damage with increasing health complications sets in.  I have a local Connecticut company who was just sensational. I also dealt with a specialty pharmacy who my doctor used to manage all approvals, denials, etc. .And when I asked them why I was (shockingly) so quickly approved, their answer was, 'why wouldnt you be?!'  They told me theyve seen very few denials.. 

So, its both amazing and depressing how diverse everybody's experiences have been relative to the way their insurance companies handled or mishandled their whole treatment experience.   Wish I could say I was particularly prescient in choosing mine, but the truth is, I chose the company I thought had the best plan for me; Harvoni wasnt even on the formulary at the time I had to make the selection.. LUCK!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on October 24, 2015, 08:00:15 pm
Good Morning-Just thought i would chime in with my experience
Age-53-Male
Diagnosed-1990
TX naive
Started Harvoni-1/26/15-8wks of tx
1.5 mil viral load
4 wk-Detected but less then 1.8 and less than 15 for Quantatative & RNA
12wk-undetected
24 wk-undetected

I experienced no side effects during tx or after. 
I live in WI and when i called my insurance company to thank them for allowing Harvoni they were kind of shocked and said "Why wouldn't we allow it?"  They indicated the would authorize the medication for anyone who has the disease even if just diagnosed yesterday.  They do NOT want folks to get any sicker then they already may be.  They really seem to get it that paying up front for Harvoni is cheaper in the long run.  I have Security Insurance. 

I was pretty luck in that I only have level 1 scarring.  I suspect no alcohol for the past 20 yrs helped.  Well wishes to all my brothers and sisters of the struggle!  Tim

That's awesome Teasker!  Congratulations!  And, hats off to your insurance company for caring and curing!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 28, 2015, 01:11:25 am
Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:)
Title: Re: Harvoni 24 week EOT results check in.
Post by: mario555 on October 28, 2015, 01:27:33 am
Lynn K. This is a wonderful news! Congratulations to you! I am very happy for you and you sure needed a break! I don't expect my tests results before Christmas even if I started before you! In Canada we use mules and smoke messages to send out news!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 28, 2015, 01:52:35 am
you guys are that advanced?

Actually this is the longest I have ever waited for HVC RNA test results I had the blood draw on 10/19/15 so 8 days

Stay loose my treatment brother!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on October 28, 2015, 03:08:24 am
Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:)

Yea Lynn!!! 8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on October 28, 2015, 04:43:08 am
Lynn, so glad you are now officially really really really FREEEEEEEEEE!

Lynn K. This is a wonderful news! Congratulations to you! I am very happy for you and you sure needed a break! I don't expect my tests results before Christmas even if I started before you! In Canada we use mules and smoke messages to send out news!!

Mario, back when a Canadian postage stamp cost ten cents, wasn't the joke "five cents for the delivery and five cents for the long-term storage"?

Gnatty
Title: Re: Harvoni 24 week EOT results check in.
Post by: dragonslayer on October 28, 2015, 09:55:52 am
Lynn.....


WHOOPEE!!!!!!!!!!!!!!!!!   :) :) :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on October 28, 2015, 10:04:15 am
Lynn K,
Great news.  I have followed your threads as our situation is very similar.  I too relapsed in 2014 with the 12 week Solvadi/Olysio combo.  I completed 24 weeks of Harvoni on 8/9/2015.  Have been SVR all during treatment and 5 weeks EOT.  My 12 week EOT comes up 11/2/2015. 

Congratulations.  Now it is time to get on with the life that has been in the 'pause' mode for too long.
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on October 28, 2015, 07:25:41 pm
Lynn K. This is a wonderful news! Congratulations to you! I am very happy for you and you sure needed a break! I don't expect my tests results before Christmas even if I started before you! In Canada we use mules and smoke messages to send out news!!

Or we let beavers slap down a morse code message with their tails smacking the lake surface, while the overflying Canada geese decode the message and present it as semaphore with their wings when they touch down on the next lake, so those beavers can propagate it further until it reaches its destination... Another time-honoured news delivery system in Canada. ;)

CONGRATS on your SVR24 Lynn!

kim

Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 29, 2015, 01:43:27 am
Or we let beavers slap down a morse code message with their tails smacking the lake surface, while the overflying Canada geese decode the message and present it as semaphore with their wings when they touch down on the next lake, so those beavers can propagate it further until it reaches its destination... Another time-honoured news delivery system in Canada. ;)

CONGRATS on your SVR24 Lynn!

kim



Too funny Kim lol

and thanks to all :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on October 29, 2015, 08:19:21 am
I've said it before but I'll say it again - very happy for you Lynn!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Butterflykisses on October 29, 2015, 09:13:54 pm
Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:)

Congratulations Lynn.  So Happy For You, Time Celebrate.
Btw, I watched you Skydiving on YouTube, Very Cool, something I've always wanted to do.

Wishing you all the Best.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 29, 2015, 09:21:01 pm
Thanks again Philadelphia!

Thanks Butterfly!

I am just a wing nut that's all lol :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on October 31, 2015, 02:15:57 am
Fantastic Lynn!

When I get the news I am going to smother some buckwheat pancakes in Maple Syrup with a tonne of butter. For some reason I have a hankering for a that and a real malted milkshake! I guess it is a memory from my childhood when I was ten and went ice skating on Lake Superior and that is what we had that morning.



 
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on October 31, 2015, 02:25:53 am
Thanks Mugwump,

OK  well I will be taking a vacation next spring to Cancun I guess they may have pancakes there since I can't drink the tequila!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on October 31, 2015, 02:45:38 am
Now I want pancakes and I don't think I can wait until 12 weeks post test :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on October 31, 2015, 10:09:54 pm
When I get the news I am going to smother some buckwheat pancakes in Maple Syrup with a tonne of butter. For some reason I have a hankering for a that and a real malted milkshake! I guess it is a memory from my childhood when I was ten and went ice skating on Lake Superior and that is what we had that morning. [/size]

It's been YEARS since I've had buckwheat pancakes. Yum! I'm going to go get some buckwheat flour and make some!

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on November 01, 2015, 12:33:48 am
 You guys are making Me hungry again, I'm a big time fan of Breakfast just about any time of day. Pig fat, flap jacks, and eggs sunny side up is My breakfast of choice. The grandkids used love it when I told them that's' what I was making when they stayed with us. I am going to have to check into the buckwheat pancakes!!! Real butter too, non of that margarine or substitute stuff for Me. Wish it wasn't so late or I would go ta the store and have them in the Morning :P :P :P :P
 
Title: Re: Harvoni 24 week EOT results check in.
Post by: BattleTheBeast on November 03, 2015, 03:02:09 pm
Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:)

WOOHOO!!! CONGRATS LYNN!!

Its about time!!! I just had my blood drawn for my results, lagging a couple of weeks but hope to have my official SVR24 by the end of the week. Waiting to go in for my every 6 month MRI right now and still fighting with some S/O side effects or maybe Harvoni or maybe 30 straight weeks cured me and left me a mess :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 04, 2015, 12:17:03 am
Thanks Mel good luck on th eSVR 24 test but I bet it will be great after all you have been through.

I had my 6 month abdominal Ultrasound and AFP test also. So far everything is looking AOK no sign of HCC.

Next spring annual upper-endoscopy and 6 month ultrasound AFP and whatever other blood tests my doctor wants along with an office visit. Guess that is the plan going forwards as far as the eye can see.

Hope you get past your sides and feel better every day
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on November 04, 2015, 03:46:50 am
Nice to hear from you Mel. I am sure you have done in the monster once and for all.
(http://n12.imgup.net/dragonslay8044.gif)
Saw my regular doc today and told him about all the post Harvoni hangover effects. He concurred and said that it is not possible to quantify the possible effect whether or not some of us are experiencing a sudden boost in the production of unnecessary HCV antibodies. But completely agreed that this effect might well explain why so many of us feel like we got hit by a train post treatment given that nothing else seems to be obviously going on.

So the logic that some of us might actually be having a kind of "knee jerk reaction" with our immune systems is the best explanation because everything else is fine and there is no indication of any other causes for what I am going through. Same as Katie and others.

One thing though I am sure as hell going to get the flu shot this year because last year it really sucked getting sick as hell right at EOT with Harvoni!
Title: Re: Harvoni 24 week EOT results check in.
Post by: ma snart on November 08, 2015, 12:31:00 pm
WOOHOO!!! CONGRATS LYNN!!

Its about time!!! I just had my blood drawn for my results, lagging a couple of weeks but hope to have my official SVR24 by the end of the week. Waiting to go in for my every 6 month MRI right now and still fighting with some S/O side effects or maybe Harvoni or maybe 30 straight weeks cured me and left me a mess :)

Just got Helens 24 week post results, NOT DETECTED    Dr. says CURED    woohoo
Title: Re: Harvoni 24 week EOT results check in.
Post by: BattleTheBeast on November 08, 2015, 01:27:47 pm
Just got Helens 24 week post results, NOT DETECTED    Dr. says CURED    woohoo

WOOHOO!! CONGRATS HELEN!!

Another win for the good guys!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: BattleTheBeast on November 10, 2015, 04:09:51 pm
My results are finally in SVR24!

I am cured.. I am really cured. Now I get to deal with just the treatment aftermath...

I feel so damn lucky that I finally get to say I AM CURED!!!

Mel
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on November 10, 2015, 04:49:26 pm
That is awesome Mel!!!  Congratulations to you! 
Now the focus can be living your life... the life you want to have!

I'm 6 week post and everything is looking good so far... I'm trusting for a good outcome too.  Love to hear these results!  Bree
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on November 10, 2015, 10:17:04 pm
More than just congratulations Mel!!! and thank you for all the hope you have extended to those of us who are in the same boat with F4.

As you so aptly put it ON WITH LIFE AFTER HCV and let us encourage the others who are going through a tough time with cirrhosis and all the complications it brings

FANTASTIC GIRL, YOU ARE THE BEE'S KNEES!!!!!!!


Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 11, 2015, 01:51:33 am
My results are finally in SVR24!

I am cured.. I am really cured. Now I get to deal with just the treatment aftermath...

I feel so damn lucky that I finally get to say I AM CURED!!!

Mel

Yay Mel Yay wooo whooooo

So glad you can say the magic words now "I am CURED!!!!!!"

didn't we say something last year about going all Braveheart on the nearest hill top throw up our kilts and shouting at the top of our lungs:

FREEDOMMMMMMMMM!!!!!!!

ok you first lol

Lynn
Title: Re: Harvoni 24 week EOT results check in.
Post by: mario555 on November 11, 2015, 07:17:36 am
I have some uplifting news for the group! Liver health can improve dramatically after reaching SVR!
I met my liver specialist yesterday and had my blood work done in order to get the results of my 24 weeks post Harvoni treatment. During that visit I asked to get a fibroscan test. He told me that it was too early to think I might have had an improvement. I started Harvoni 1 year ago and did a 24 weeks treatment. I was SVR12 after the treatment. I believe I am still UND because of my elevated energy level. Anyway, at the beginning of my treatment, I received a fibroscan result of 28 which is well into cirrhosis. This test was repeated twice at that time (27 and 28). Yesterday, the same nurse did my test. At the end of the test, she appeared 'mixed up'. She said 'Wait a minute". She redid the test with the other device (she has a machine with 2 probes). 5 minutes later she said "you have a result of 13". She left the room and came back with the doctor because she had to tell someone! The doctor had never seen such a rapid improvement!
I don't know what to think anymore! Were the tests properly done? Was the machine in good working order? Both the beginning test 1 year ago and this test yesterday were duplicated.
I have read multiple articles talking about an improvement appearing in many post-hep patients. The article talked about a 5 years delay for the improvement. It is true that those follow up were done through the old methods and were done a minimum of times but with the fibroscan, tests can be done fast and easy. It seems improvements can happen much faster than previously believed!
Anyway, that is my uplifting news for today. If anyone has the opportunity to get a fibroscan after your cure please let us know if I am a real lucky bugger or if improvements are happening to all of us!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on November 11, 2015, 08:52:39 am
WOW, Mario! It couldn't happen to a nicer guy. The same nurse and the extra-careful checking -- it sure sounds for real. I can hardly wait for beto to see your post.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on November 11, 2015, 10:56:14 am
Mario, that's awesome.  Beto just had a similar result on his scan and and that was at about 5 weeks post treatment!  This is a great trend for post recovery.  Like Gnatty, I can't wait for Beto to see this.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 11, 2015, 01:04:47 pm
Wow that is great news Mario!

I guess I will see if they will do a fibroscan next April when I go in for my annual visit. What I am most looking for though is an improvement in my platelet count as that would definately indicate a reduction in portal hypertension and a structural improvement to my liver.

Anyway thanks for the hopeful news and congrats again
Lynn
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on November 11, 2015, 02:20:53 pm
Fantastic news Mario about such dramatic reduction in fibroscan score! Beto had a similar experience. Sounds like this is the real deal! Gives hope to all.

kim :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Corey on November 18, 2015, 07:09:08 pm
Hello -

Just another SVR+12 check in.  24 weeks of Harvoni....SVR+12 results came in yesterday.  Still trying to digest that magic word "UNDETECTED".

Cool, huh?!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on November 18, 2015, 07:41:43 pm
 8) YES!  8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on November 18, 2015, 07:43:40 pm
Cool beans!!! 8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 18, 2015, 09:19:51 pm
Congrats Corey

My favorite flavor UNDETECTED!

Welcome to the other side

Lynn
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on November 20, 2015, 04:29:47 pm
svr 24 finally!
Time to start recording happy dance(s)

Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on November 20, 2015, 04:31:57 pm
awRIIIIIGHT!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on November 20, 2015, 04:38:39 pm
C*O*N*G*R*A*T*S  M*U*G*W*U*M*P !!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on November 20, 2015, 04:55:13 pm
Great news Mugwump and Corey!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on November 20, 2015, 05:04:11 pm
Thanks everyone! I spoke to my nurse and she let me off the hook and my status on her spreadsheet is now green instead of pink. LOL We discussed the post treatment possibility of how the liver might be producing antibodies for the disease that it no longer has. She said that it is a distinct possibility that many who clear the disease are actually experiencing a return to a robust immune system and that it is very possible that this also causes flu like symptoms in some individuals.

I will get another fibroscan in the new year after my liver has a chance to heal long term. It turns out there is very much interest in those who were f4 at treatment and clear the virus and how much of an improvement we experience over the long term. This is because the specialists are seeing something new with so many people at f4 clearing the disease. It is a whole new ball game and it merits close examination.

Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 20, 2015, 10:03:45 pm
Like your jumping happy fish mugwump congrats and woo whoooooo!

Yes an interesting time for science of liver disease I was planning on asking to do a fibroscan next April when I go in to see the nurse I likely won't be seeing my doctor.

Our bodies will forever produce antibodies to hep c that is why we will always test positive on hep c antibody testing. But who knows if maybe the immune system has forgotten what it is like to be free of the virus I am sure mine probably has after 37 years of being infected.

Really as I started treatment 1 years and 2 days ago and was not detected in mid December my liver has been on vacation for almost a year now pretty cool.

Congrats again and now fish beware, Eric is coming for you with renewed health!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on November 21, 2015, 03:04:36 am
. . . Our bodies will forever produce antibodies to hep c that is why we will always test positive on hep c antibody testing. . . .
Presumably. Here's the odd thing: after TWO complete rounds of hep B vaccination (2000, 2003), my body, after testing positive for hep B antibodies, at some point went back to testing negative for hep B antibodies. (I was checked for A and B antibodies before starting Harvoni treatment -- I still tested positive for A antibodies, but not for B antibodies.) When I asked the nurse whether I should be vaccinated against hep B a third time, she asked the hepatologist, who said no, some people just can't seem to retain the ability to produce hep B antibodies.

Anybody know of anyone who reverted back to testing negative for hep C antibodies the way some of us do for hep B antibodies? I plan to ask the hepatologist, but I don't get to see him until January.

Gnatty
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 21, 2015, 04:28:13 am
Wow interesting I wanted to know if I needed the measles vacine as I did not have the vaccine as a child because it did not exist yet.

I did remember having the measles. So I get tested and I do have measles antibodies from my bout with the measles and did not need the vaccine.

I haven't been tested since my hep A and hep B vaccinations to make sure that I had developed antibodies against them just assumed it was a given

Found this about hep b and the meaning of testing negative for antibodies after vaccination

https://web.stanford.edu/dept/EHS/prod/researchlab/IH/SUOHC/HBV_FAQ_5-17-2011.pdf
Title: Re: Harvoni 24 week EOT results check in.
Post by: Herrjoel on November 22, 2015, 11:23:07 am
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.

Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on November 22, 2015, 11:58:31 am
Wow, Herrjoel, it's terrific that not only are you cured, but also that you are making such an extraordinary offer! Please tell the hypochondriac in you that your generosity has given your immune system such a boost that the "bad guys" have no chance to make inroads.

Gnatty

P.S. Watch that appetite! I've gained a few pounds post-Tx, and they are proving very difficult to get rid of.
Title: Re: Harvoni 24 week EOT results check in.
Post by: chem_chic on November 22, 2015, 12:05:15 pm
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.

Congrats I am so happy for you. Are you serious about helping out with someone elses treatment? If so feel free to PM me. I
Title: Re: Harvoni 24 week EOT results check in.
Post by: GLCII on November 22, 2015, 01:38:39 pm
Congratulations

Herrjoel, Mugwump, Corey and everyone else that's cleared the virus. Hopefully everyone else, that's on the board and treating, will be able to post SVR's.

Like Mugwump, I recieved my SVR 24 on the 20th. From here on out, I might make Nov. 20th my personal holiday.  :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on November 22, 2015, 04:20:41 pm
Congratulations

Herrjoel, Mugwump, Corey and everyone else that's cleared the virus. Hopefully everyone else, that's on the board and treating, will be able to post SVR's.

Like Mugwump, I recieved my SVR 24 on the 20th. From here on out, I might make Nov. 20th my personal holiday.  :)

I love that!!! Date of SVR a personal holiday.  As soon as I get there, I think I'll do that too... 6 weeks post I'm still UND so odds are definitely in my favor!
Title: Re: Harvoni 24 week EOT results check in.
Post by: chem_chic on November 22, 2015, 04:58:01 pm
Wonderful news Bree! We will be waiting for the good news!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on November 22, 2015, 05:22:00 pm
Wonderful news Bree! We will be waiting for the good news!

Why thank you, ChemChic!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on November 22, 2015, 06:08:55 pm
Bree, of course you'll make SVRforever -- aren't you hosting the reunion luau? Whether Tommy is going to be able to get the gator entree on board an airplane is far more unsettled than whether you'll reach the next SVR milestone.  ;)

Gnatty
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on November 22, 2015, 06:10:20 pm
GLCII

Congrats on your SVR if we had a calendar with everyone's SVR date we probably could celebrate every day of the year!

With so many of us making SVR maybe every day should be a day for a celebration of life.

Best to all who have been cured so far and hoping the next time is the cure for those who so far haven't made it there yet
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on November 22, 2015, 06:41:32 pm
Bree, of course you'll make SVRforever -- aren't you hosting the reunion luau? Whether Tommy is going to be able to get the gator entree on board an airplane is far more unsettled than whether you'll reach the next SVR milestone.  ;)

Gnatty

Hey Gnatty,  if Tommy can't get the gator thing through... they are quite picky about bringing animals and vegetation over here aka invasive species (which we all have had personal experience with :) we can have coconuts, mango, luau meats, halpia, and all kinds of local fare... lomi lomi salmon, etc... after we do an awesome hike and some sunning at some of the most stunning beaches on earth I happen to know about ...and oh yea, the documentary!!! ...The future is so bright I have to wear sunglasses  8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: lporterrn on November 22, 2015, 11:04:02 pm
There is lots of wonderful news being shared on this thread. Congratulations to everyone, and most especially Mel who has been a long time Forum Member and example of compassion and fortitude.

Herrjoel, your generous offer caught my eye. 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/ (http://www.patientadvocate.org/) or Patient Access Network http://www.panfoundation.org/ (http://www.panfoundation.org/) or the Bonnie Morgan Foundation for Hep C http://www.notwithoutafight.org/ (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.
Title: Re: Harvoni 24 week EOT results check in.
Post by: GLCII on November 23, 2015, 07:17:07 pm
Thanks Lynn

By this time next year, this board will probably be experiencing multiple SVR posts on a daily basis. So much so that this site might need its own dedicated server to handle all the traffic and posts. Wouldn't that be cool.

 Now that the doctors have the Hep C by the throat with harvoni and scientists now having a base drug on which to improve on and manipulate and new drugs coming to market, I see next year being the big year as far as cures, of all genotypes, go. I also see the relapsers being retreated and hopefully coming back and posting their final SVR's. Wouldn't that be cool?!

Eventually, the site might want to start a dedicated thread for "Retreated Relapsers" so that the people on here, that relased and others, can come back and post their good news stories. It's kind of hard Not to Think of them, when posting an SVR 4, 12 & 24.

I think most of us, who were cures by the harvoni and had a SVR, are going to remember our SVR dates for the rest of our lives. How can we not. It's deffinitly a milestone date, especially for those of us who are multiple relapsed retreaters and have been living with this for decades.

Even though every day is a day of celebration from here on out, I think I'm go to take November 20 as a day of celebration for myself. This way I have a legitimate excuse to take a day off work. I also like the fact that it's the week before Thanksgiving.

Bree

I have No Doubt, that since you made SVR6, you Will make SVR12 and 24 if you decide to do the 24 week test.  ;) In your case and a few others, it's just a matter of waiting to get the news.

 
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on January 29, 2016, 02:33:19 am
Just got my SVR24 results today!! And my book about my Hep C journey also came out today!! I feel like the Universe is carrying me along in its magnificent current right now. :)

I wrote my book during my 12 weeks of treatment (May-July 2015), and I posted about that here: http://forums.hepmag.com/index.php?topic=3853.msg37829#msg37829

Good health to all!
kim :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on January 29, 2016, 02:39:29 am
Hi Kim

Wow SVR 24 and a published author on the same day!

Nice pic! So there you are :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on January 29, 2016, 02:46:02 am
Yes Kim, you are cured and "Undetectable"!  I'm so thrilled for you and your book will help many others!  8)  Hip Hip Hooray!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on January 29, 2016, 09:00:29 am
 Yeppers to all You Heppers! ;) Looks like a never ending Happy Dance is in the making. Think we might have to make it a relay or schedule breaks. Great to hear Kim 8) 8) 8) 8) Somebody dim the lights a little, it's starting to blind Me ;D ;D BTW, just noticed the Avatar. One day I will have to challenge My old Tech-Challenged butt and figure it out! :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on January 29, 2016, 01:37:16 pm
BTW, just noticed the Avatar. One day I will have to challenge My old Tech-Challenged butt and figure it out! :)

No challenge required, it turns out, since Gnatty posted these great instructions about how to make any photo your avatar here, using Tinypic.com: http://forums.hepmag.com/index.php?topic=3234.0

I don't know if I would have figured it out otherwise.

Cue the sunglasses!  8) 8) 8)
kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: scott on January 29, 2016, 05:39:09 pm
Hi all I was preparing an elaborate speech to scream out that I also have reached SVR 24 but then I flipped a switch and my letter body disappeared into cyberspace! So there it is SVR 24 for Scott.
  My liver enzymes are still in the 50's so my doc has scheduled blood work for three months from now and I'm attaching a pic of the REQ form for those who know what it all means, and please if you do know please educate me! However it seems they won't let me insert from my own desktop, and photobucket is down at the moment so I'll get back with that.

Meantime I am very happy the virus is finally gone!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on January 29, 2016, 05:49:41 pm
Congrats on reaching SVR24, Scott! :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on January 29, 2016, 06:01:50 pm
Yep, Scott, so happy you persevered and got rid of that nasty buggah!  Congrats! 8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on January 29, 2016, 06:23:16 pm
KIM SCOTT;


I don't know what to say other than another than it is great to see others get the monkey off their back!  I feel like going fishn' Trouble is, cutting a hole in the ice big enough with a chain saw to get in a good fly cast where I like to fish can be a little difficult.

FANTASTIC
Title: Re: Harvoni 24 week EOT results check in.
Post by: scott on January 29, 2016, 07:36:14 pm
I will soon be going ice diving so cut the hole to 8 feet in a triangle for me! I'm actually going on a wreck dive sunday in the st.lawrence river the water is 36*F ! I get it thoughbut the fish won't be awake enough to go after that fly, and even fish know there are no flies in winter !
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on January 30, 2016, 03:22:32 pm
Scott my enzymes were up and bilirubin was up over 21 at eot and didn't go down till after 24 weeks post tx.

TOO MUCH LOOKING IN THE MIRROR for jaundice ensued and the warts started to show up on my worry glands!

Cirrhosis is a PITA and we are all going to respond and heal differently.

Anyway when you get into the St Lawrence I hope you have good water quality. What they did in Montreal (http://www.thestar.com/news/canada/2015/11/15/montreals-sewage-dump-into-st-lawrence-ends-three-days-early.html) should have flushed well north by now, you would think! And the brown tea colour from all the deciduous river flushed tannis that the water north of Montreal is famous for should be reduced and you might have more than the normal 5-6 feet of vision. If you are diving north of Montreal watch out for all the used cars and snow mobiles on the bottom LOL

Keep your eyes peeled for elvers moving down, there should be some moving out of the main streams by now. If I were to fish in the Lower St Lawrence this time of year I would not try conventional methods, instead an imitation of the current food source would be more effective at the river mouths as the ice clears.

I gather you will be diving where there is less current at the opening past Montreal rapids?
Interesting area that I have always wanted to explore.

Cheers
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: scott on January 30, 2016, 05:51:05 pm
No worries for me Mugwump the St.Lawrence runs west to east and we go west from Montreal to dive where the shipwrecks and long abandoned locks are submerged.. I'm expecting vis about 20 to 30 ft.


Whatever was dumped in has most certainly long since flushed away. It was only 25 years ago that all city waste water was re-directed to the water treatment facilities and yet nobody used to complain back then when billions of litres a year would float downstream!, So the project comes along and says well we are going to have to dump X amount of waste into the seaway for X amount not exceeding 7 days and everyone hears about it! Also the dumping lasted three days less than originally expected with significantly less raw sewage infiltration.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on January 30, 2016, 07:50:30 pm
No worries for me Mugwump the St.Lawrence runs west to east and we go west from Montreal to dive where the shipwrecks and long abandoned locks are submerged.. I'm expecting vis about 20 to 30 ft.


Whatever was dumped in has most certainly long since flushed away. It was only 25 years ago that all city waste water was re-directed to the water treatment facilities and yet nobody used to complain back then when billions of litres a year would float downstream!, So the project comes along and says well we are going to have to dump X amount of waste into the seaway for X amount not exceeding 7 days and everyone hears about it! Also the dumping lasted three days less than originally expected with significantly less raw sewage infiltration.
Cool! So I guess you will be going in off L'lle Perrot, up in the fresh water country with no tides. The area that fascinates me the most is down past Quebec City around Saint Anne de Beaupre where the aquatic life is different. I always think of Quebec City as being north by east of Montreal as the crow flies, but maybe crows in Quebec fly a little differently. AARFF
Out here in Victoria we are a little behind the times and rely too heavily upon the much vaunted "theory of dilution to take care of our effluents.


I was pulling your leg about Montreal[size=78%],[/size] ;)


Have a great dive!
Eric


 
Title: Re: Harvoni 24 week EOT results check in.
Post by: Patience on February 23, 2016, 01:16:59 pm
 :) :) :) :) My 24 weeks post tests came back as undetected! Another notch on the Harvoni belt! Has anyone heard of relapses occurring after being undetected at 12 or 24 weeks post treatment?
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on February 23, 2016, 01:27:38 pm
Congrats patience
I have not

SVR12 is 99.8% likely not to relapse and most doctors are calling SVR12 cured!

SVR24 is just icing on the cake.

They say the only way to again to have a viral load is to get reinfected the odds of relapse are nil

You are FREE  :)

Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on February 23, 2016, 01:30:52 pm
:) :) :) :) My 24 weeks post tests came back as undetected! Another notch on the Harvoni belt! Has anyone heard of relapses occurring after being undetected at 12 or 24 weeks post treatment?

Yea Patience!  Congrats!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Patience on February 23, 2016, 10:19:46 pm
Thanks Lynn and Bree. My Gastro did say if I was undetected at 24weeks it would be as if I never had been infected. Kinda liked hearing that! Hope he's right.

So, having always been a huge fan of icing, Im going to eat lots of cake!
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on February 26, 2016, 07:29:45 am
Just got my 24 week post Harvoni blood work results.  SVR.  Great news.  I'm enrolled in a 5 year U of Penn clinical study tracking fibrosis.  I'll be getting a Fibroscan in June to establish baseline.  Do not give up as this disease is on it's way to being eradicated.
1. 4wk - 12 wk EOT VL status    =   SVR
2. Treatment duration   =   24 weeks Harvoni only -  2/23/15 to 8/10/15
3. tx naive or experienced 
•   Interferon/Ribavirin  -  2003 timeframe  -  unsuccessful, taken off treatment due to no viral load reduction coupled with anemia, low platelet count, low WBC count
•   Solvadi/Olysio combo.  -  spring 2014  -  12 week couse -  SVR  all during therapy, relapsed 12 weeks after treatment
4. Genotype (1a or 1b)  =  1a
5. F1-F4 fibrosis status (date)  =  unknown, will be getting Fibroscan in June, enrolled in 5 year University of Penn study for fibrosis tracking.
6. Initial VL (date)  =  6 million units

Title: Re: Harvoni 24 week EOT results check in. YAHOO CHINO and PATIENCE
Post by: Mugwump on February 26, 2016, 10:30:48 am
I WON"T MESS WITH THE FONTS BUT PATIENCE AND CHINO YAHOOOOOOOOO!!!!! I am so glad that I did't do the S/O myself. I do not know if I could have handled another failure!


I should be getting the one year results early in May and hopefully the determination that my cirrhosis is under control and not a concern. I just had two ultrasound sonogram checkups in a period of two months so if there are bile duct and problems with blood flow I will be informed. No sign of ascites on the first one.


It is really encouraging that us 24 weekers are seeing cures. If there is an increased risk of damage during treatment by going the 24 week route the risk certainly seems worth it, considering that many of us were starting to knock on heavens door!


PS my intention starting this thread was so that both the 12 and 24 week treatment duration individuals can share the joy of reaching the 6 month SVR milestone. 


Perhaps it might be a good idea to concatenate the treatment results for all drugs and I should have title the thread 24 week SVR check in. Perhaps a moderator can change it??? 


Time to study up Canarios again because my feet are shuffling in a happy dance seeing more make it out of this nightmare of a disease.


Eric ;-> <-; (-;opps I messed it up AGAIN ROLF
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on February 27, 2016, 09:22:18 am
I have some uplifting news for the group! Liver health can improve dramatically after reaching SVR!
I met my liver specialist yesterday and had my blood work done in order to get the results of my 24 weeks post Harvoni treatment. During that visit I asked to get a fibroscan test. He told me that it was too early to think I might have had an improvement. I started Harvoni 1 year ago and did a 24 weeks treatment. I was SVR12 after the treatment. I believe I am still UND because of my elevated energy level. Anyway, at the beginning of my treatment, I received a fibroscan result of 28 which is well into cirrhosis. This test was repeated twice at that time (27 and 28). Yesterday, the same nurse did my test. At the end of the test, she appeared 'mixed up'. She said 'Wait a minute". She redid the test with the other device (she has a machine with 2 probes). 5 minutes later she said "you have a result of 13". She left the room and came back with the doctor because she had to tell someone! The doctor had never seen such a rapid improvement!
I don't know what to think anymore! Were the tests properly done? Was the machine in good working order? Both the beginning test 1 year ago and this test yesterday were duplicated.
I have read multiple articles talking about an improvement appearing in many post-hep patients. The article talked about a 5 years delay for the improvement. It is true that those follow up were done through the old methods and were done a minimum of times but with the fibroscan, tests can be done fast and easy. It seems improvements can happen much faster than previously believed!
Anyway, that is my uplifting news for today. If anyone has the opportunity to get a fibroscan after your cure please let us know if I am a real lucky bugger or if improvements are happening to all of us!

Mario,
I don't know the answer to your question but I am enrolled in a 5 year U of Penn study to track fibrosis with those who cleared Hep C but have some degree of cirrhosis.  My base line blood work and initial Fibroscan will be performed in June.  I will keep posting with info. & results.
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on February 27, 2016, 05:27:52 pm
I've been dealing with this dreaded disease since 1973.  I am finally free of Hep C after a 24 week course of treatment with Harvoni.  I had two prior relapses on different treatments.  My 24 week post treatment HCV was undetected and I knew it would be.  My hepatologist is one of the best in the U.S. and is involved in most of the clinical research studies.  When I saw him in January he was optimistic that Hep C would be eradicated.  He enrolled me in two clinical studies with my approval.  The first is the development of a more precise and thorough one to replace the current AFP tumor marker test.  The second is a 5 year clinical study involving those who cleared Hep C with some degree of fibrosis.  They are currently researching drugs to repair a damaged liver from Hep C.  To all of those who have Hep C, hang in there.   
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on March 20, 2016, 10:37:39 pm
24 Week Results Check.  Tested March 14, 2016 (exactly 24 weeks post treatment)  Results.  Cured.  HCV Quant:  NOT DETECTED  qual:  NEGATIVE
ast:  26  alt:  18 

I called myself cured at 12 weeks and this is icing on the cake!!!!  8) 8) 8)
So happy to be rid of this and ready to advance my life... one step at a time!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on March 20, 2016, 10:56:26 pm
CONGRATS BREE !!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on March 21, 2016, 12:37:20 am
Congrats Bree!

I am also reporting in with my 44 week 10 months post results still not detected!

ALT 24, AST 22, AFP 10.8,  platelets up to 111.

Cool 8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on March 21, 2016, 01:12:55 am
Congrats Bree!

I am also reporting in with my 44 week 10 months post results still not detected!

ALT 24, AST 22, AFP 10.8,  platelets up to 111.

Cool 8)

 That's fab Lynn... your ALT and AST are great.  not sure what the AFT is about.  My platelets are still low, that's the only thing out of whack as far as I know.  On March 14 they are 123 ... in Dec. was 141 and in Nov. was 88, seem to fluctuate in that range.  Anyway, seems like we are on the mend! 
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on March 21, 2016, 01:27:34 am
AFP or Alpha-fetoprotein is used as a tumor marker to help detect and diagnose cancers of the liver along with abdominal ultrasound. As I have cirrhosis and am at increased risk of liver cancer I have this blood test along with all the usual tests.

My old test from 2013 was 26.6 with 0 to 8.3 being normal so this is the first time I have been this close to normal AFP in years same for the platelet count which had been in the 80 to 90 range.

Yep our numbers are heading in the right direction :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Patience on March 21, 2016, 07:38:56 am
Fantastic news, Lynn and Bree! I used to think "normal" was boring - now it's my favorite status!
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on March 21, 2016, 12:02:39 pm
Yeaaaaaaa! Lynn...girl I'm telling you, your liver is getting so much better.  Looking forward to more good news.

Bree...my twin hepper.  So happy for you.  Now you have to have a party.  My bloods were drawn last Friday.  So per usual I am feeling the anxiety of the wait.

Gnatty...what the heck?  You should be soon too...
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on March 21, 2016, 01:09:07 pm
 Bree, here is to You & Your SVR24. Here in Texas, that is gravy on the biscuit! ;) Tell Else that I got her last PM. Sure is a long way from upper west coast. At least she gets to spend some of it with You!

 Lynn, great to hear. Very deserved on Your part. Good looking numbers , too! :)

 Beto,  I'll be waiting for the results. Mine also comes up in a couple of weeks.

 Gnatty, You should be right there as well , right?
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on March 21, 2016, 02:44:10 pm
Thanks Yall and all of us, we're coming up cured one by one. 
I just know the numbers will be great for those waiting....
The support system of our group is amazing!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on March 21, 2016, 05:05:35 pm
Yes, our support system practically has us-all joined at the hip(s)--picture THAT! It seems almost solipsistic to be congratulating everyone -- we're ALL going to be UND!
   I took the labs last Wed. and was going to call tomorrow, since the VL takes >= 3 business days, but with you-all asking, I just called: see the updated sig. file below. What with the reference ranges for the two different labs (hepatologist and PCP), there are barely enough characters left for the results of the FibroScan I'll take in late June.

Gnatty
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bree on March 21, 2016, 05:14:19 pm
Yep, awesome stuff Gnatty!!!! I know what you mean, it's almost a foregone conclusion!  We are all just so stoked to be free!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on March 21, 2016, 05:17:05 pm
Awesome news on your SVR24, Gnatty! Feels great to see that in print, doesn't it?

kim :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on March 21, 2016, 08:01:45 pm
Thanks, Bree and Kim. Hooray to everyone, including Beto and Tommy*, who'll be celebrating very soon.

*and Scout and Philly (and anyone else I forgot and won't be able to add once the Modify button goes away on this post)
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on March 21, 2016, 08:27:10 pm
hip hip hooray!  I am so happy Gnatty.  I have always considered the 24 the gold standard.  I know 12 is the cure considered by many, but when I got my 12 I was more saying; "3 more months".  So cool that you and Bree got the news at the same time.  Yes, can't wait for Tommy and others,,,oh yes I guess me too...to lick this thing once and for all.  I will know in a day or two, and yes I'm a wuss as usual...hehe.  When you get your scan in June you will be F:0  :) :) :) :) :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on March 21, 2016, 11:09:25 pm
 Gnatty, TOP OF THE WORLD MA! Glad to see Your results, happy for You Dear!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on March 21, 2016, 11:32:47 pm
 Hey Gnatty!! Does that mean We are Hippies again, or is the ex-heppies. LOL.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Scoutdoy on March 21, 2016, 11:51:49 pm
Wow gnatcatcher, that is just fantastic. I am really happy for you! Now enjoy your freedom and let the elephant on your back go its own way. You have made it, and even made the second phase of ..doubledog 24 week...are you positive it's gone test......really....., it's gone!


Scout
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on March 22, 2016, 05:48:02 am
Thanks, Scout. Believe it or not, when the results email appeared in my inbox a few minutes after I phoned, my heart didn't go crazy while I was opening the attachment. Also, my bp readings have been pretty darn good lately!

Tommy, another gem from you (ex-heppies). -not sure this straight-laced, nerdy classical musician ever qualified for hippiedom, but heppiedom yep definitely.

Beto, pretty soon we'll need a thread to record everyone's kPa drops.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on March 22, 2016, 05:57:07 am
Well done Gnatty. How fortunate we are to have this merry band with which to share the joy. What an awesome support group - could not have asked for better!
Title: Re: Harvoni 24 week EOT results check in.
Post by: BillT on March 22, 2016, 01:24:10 pm
Congratulations Bree,Scott,and Gnatty.I'm chomping at the bit to get my 12 weeks done.I did get a 24 weeks set up today but I'll be happy to get past the 12 right now.Congratulations again to all of you.This keeps getting better by the day. :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on March 28, 2016, 03:49:54 pm
Add Beto to the cure list!  Sweet!  ALT 19 AST 18 ALP 50 HCV UNDETECTED!!!!

To all the newbies sweating bullets over results; this is your future.

To all the folks fighting for meds and to those who have had the misfortune of a relapse...you will see cure, and the remainder of us will not rest until we are all free.

Congrats to all of those who have made it all the way to 24 and beyond.  let us all keep up the fight for our hepper brothers and sisters. 

If I had not been able to get these meds for another few years I believe it would have been too late.  The four or five years prior to Harvoni treatment I had really started to go down, but was in such denial and disassociation I had convinced myself that I was OK.  I was not. 

Party at Bree's!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on March 28, 2016, 05:11:31 pm
CONGRATS BETO ON YOUR SVR24 !!  8) 8)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on March 28, 2016, 06:13:53 pm
Yeah, Beto! So very glad it wasn't too late!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Scoutdoy on March 28, 2016, 08:31:09 pm
Congrats Beto,,,, you go girl! Getting my 24 week test tomorrow...hope I can join your cure train!


Scout
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on March 28, 2016, 08:56:36 pm
Awesome news Beto congrats!!!!!!!

Good luck Scout!!!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on March 28, 2016, 09:55:37 pm
 Way to go Beto! I can almost see the grin on Your face as I read Your post ;D El Rey del Mundo, 8) Damn , I had to dim the contrast on My screen to finish reading it!
 Still waiting on the call to go pick up My Lab orders. I found out that only the main nurse that was there when I started Tx. is left. One left, one went on maternity leave, and the one left is covered up deep. Doesn't look like the temp. is doing very good. Oh well , it's out of My control yet again! ::) :o :-X It ain't like it's My first, second, or third rodeo >:(
  Happy to read the good news there Big Boy! Congratulations and salutations!
Title: Re: Harvoni 24 week EOT results check in.
Post by: kimlav on March 29, 2016, 09:52:55 am
Congratulations Beto! I may be one of those sweating bullets...

I have been lurking for quite some time and I feel like I "know" so many of those that help with advice, information and lots of empathy. Thanks to all those who post their experiences - it has been an invaluable resource to me.

Take care,

Kim

Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on March 29, 2016, 04:10:06 pm
Congratulations Beto! I may be one of those sweating bullets... I have been lurking for quite some time and I feel like I "know" so many of those that help with advice, information and lots of empathy. Thanks to all those who post their experiences - it has been an invaluable resource to me.

Take care,

Kim

Welcome Kim (from one Kim to another)! And congrats on completing treatment. Good luck on your EOT results and beyond. :)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: kimlav on March 30, 2016, 09:49:46 am
Hi Kim,

Thank you for the kind welcome.

I did receive some results yesterday and I am happy but slightly disappointed. The nurse told me it was undetected but when I pushed for exact numbers, I was told it read < 12 which equals zero to them. Not so much from my research....

So now I wait for the next test in June. Sigh.

I signed one of my posts as "Kim in the Boreal" thinking of you. :)

Kim

Kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on March 30, 2016, 01:26:48 pm
On treatment testing means little we have had a few here who were weakly detected at end of treatment but still went on to acheive SVR. The only test that matters is the 12 week post test. On treatment testing really survers no propose except to reassure the patient and can cause unnessary stress when the person does not see a not detected result on treatment.

Everyone sees significant reductions in viral load to not detected on treatment the only test you want to see it 12 weeks post not detected any prior viral load test is just noise.

You will be cured believe it!
Title: Re: Harvoni 24 week EOT results check in.
Post by: kimlav on March 30, 2016, 03:43:38 pm
Hi Lynn,

Thank you! I needed that.  :)

I have noticed that most who had a < 12 or < 15 did go onto SVR 12 so it helps a lot to read everyone's posts.

I will post in the right place next time.  :)

Kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Scoutdoy on March 30, 2016, 09:35:41 pm
Just got my 24 EOT test results in,,,,undetected! AST 18 ALT 10.....

Oh what a feeling! The 12 week EOT was the big one, but this one just reassures me that I am finished!


Scout
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on March 30, 2016, 10:28:11 pm
Well there You go! You made it ! With all the bells & whistles I might add! Super news My dear. So good to hear the news. 2016 is going to be Your year
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on March 30, 2016, 11:23:31 pm
Awesome news Scout!!!  ;D
Title: Re: Harvoni 24 week EOT results check in.
Post by: Scoutdoy on March 30, 2016, 11:45:37 pm
Thanks tommy, I got rid of the husband, got rid of the virus, and now I am thinking of getting rid of the job. I am feeling some bigger and better changes coming my way this year! If I could just kick the smoking habit



Scout
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on March 31, 2016, 12:18:12 am
Congrats on your SVR24 Scout! :)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on March 31, 2016, 06:21:45 am
Scout, you're going for a trifecta -- your immune system must be really pumped!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on March 31, 2016, 08:33:56 am
 Scout, Yea the smoking is a real bugger to stop. Especially with all the turmoil around. Good luck with that! I'm still having a problem with it as well! >:( ;)
Title: Re: Harvoni 24 week EOT results check in.
Post by: april on April 01, 2016, 01:02:02 pm
6 months post treatment I am still undetectable, the Dr. said I am considered cured. Harvoni treatment was a breeze, hardly even knew I was taking it. Past treatments with interferon and ribaviron nearly killed me. I am so thankful for this new treatment and hope anyone with HepC has the opportunity to try it. I was on 3 different treatment plans in the last 15 years, nothing worked after months and months on the awful treatment plans of the past .
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on April 01, 2016, 01:05:06 pm
Wonderful news, April! It must be especially sweet after all you went through earlier.
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on April 01, 2016, 01:12:27 pm
April is your avatar and and it is April 1.  Such wonderful news!  After what you went through with the PEG failures...you so deserved the 'breeze' with Harvoni.  Now go out and change the world :) :) :) :) :) :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on April 01, 2016, 02:57:06 pm
 April, Glad to see that You aced the exam without any problems. Congratulations on Your success and SVR. 8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on April 01, 2016, 04:00:34 pm
Hey Scout...did I congrat you yet?  Coolio for you-lio.  I'm thinkin bout chucking my damn job too.  That's right girl, clean house completely.  Start anew!  :D
Title: Re: Harvoni 24 week EOT results check in.
Post by: shawreb2015 on April 02, 2016, 12:54:48 am
It was very heartening to hear about your success with Harvoni. I started on Harvoni 8 days ago and I am still having some minor side effects: mild headaches some days, light-headedness, some chills and fevers at night, but overall it is not bad. I waited for almost a year to get approved for the Harvoni and I am hoping that it works well for me. I have COPD and Rheumatoid arthritis, so I think some of the side effects may be from that as opposed to Harvoni. I admit that I am having a hard time drinking a lot of water, but am going to stick with it. I was starting to feel tired and fatigued before the Harvoni due to Hep C being in my body for many, many years unbeknownst to me. Thank God I finally got approved. Thanks for the upbeat prognosis and I hope I have the same luck.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on April 02, 2016, 01:16:02 am
Hi Shawreb and welcome

If it helps at all it doesn't necessarily have to be water just fluids. So juice and even ice tea all add up to fluid intake. Even though tea has caffeine the diuretic effect is off set by the volume in vs out.

Good luck to you on treatment
Title: Re: Harvoni 24 week EOT results check in.
Post by: HazelAustralia on April 02, 2016, 06:27:45 am
Great to read your good news April  :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on April 02, 2016, 08:09:43 am
It was very heartening to hear about your success with Harvoni. I started on Harvoni 8 days ago and I am still having some minor side effects: mild headaches some days, light-headedness, some chills and fevers at night, but overall it is not bad. I waited for almost a year to get approved for the Harvoni and I am hoping that it works well for me. I have COPD and Rheumatoid arthritis, so I think some of the side effects may be from that as opposed to Harvoni. I admit that I am having a hard time drinking a lot of water, but am going to stick with it. I was starting to feel tired and fatigued before the Harvoni due to Hep C being in my body for many, many years unbeknownst to me. Thank God I finally got approved. Thanks for the upbeat prognosis and I hope I have the same luck.

Glad you joined us, shawreb. It is possible your RA is an "extrahepatic manifestation" (EHM) of the Hep C. Once a person cures the HCV, sometimes other problems lessen or go away.

As for fluids, ditto what Lynn said. If your urine is light yellow or clear, you're getting adequate fluid. Taking in a little more than that may lessen the headaches, but there's no need to consume vast quantities. Although every body is different, a 160# person drinking around 80 ounces (10 cups) of total fluid/day seems to suit Harvoni.

Best wishes,

Gnatty
Title: Re: Harvoni 24 week EOT results check in.
Post by: 2Thrive on April 15, 2016, 12:46:17 am
Hi

As another 24 week Harvoni victor I am proud to be able to post here and to join the ranks of all of us who have fought the fight.  It has been a long journey and many times I read these posts and took encouragement. I have been touched, enlightened, encouraged and inspired. 

We know we embarked on a journey that was not well defined, and that we are the "final trial". It has been gut wrenching, exhilarating, scary, exhausting,tearful and fearful, but yet a joyful ride. Despite my fights with the insurance providers and days of headaches, fatigue and mental daze, I still view myself as fortunate. I have been blessed by these forums, family, friends, a network of traditional and non traditional Health Practioners. I have been under-girded in prayer by many, have trusted my instinct and relied on my Creator for guidance.

After 8 weeks I was virus free and couldn't believe it. When I stopped treatment after 6 months of taking it,  I felt lost without "my friend" Harvoni. I knew as long as I took the pill I was ok, but ending treatment in January I entered into the "unknown".  I was scared and shaken. Now, 12 weeks after treatment, I am still virus free!! My once F4 liver has normal enzymes! That tells me it is healing. I hope when the next 12 weeks are up that I will not only be telling you I have a SVR, but I believe I will be telling you about how my liver has regenerated.

Be of good faith, my fellow journeyers! Miracles DO happen!

And as my moniker indicates....my prayer for all of you is......

2Thrive


HCV since 02/23/1984
GT 1b
03/2002 to 10/2002 Pegintron/Riboviron -Failed
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 Weeks
08/21/15 VL 1,520,000 ALT 39  AST 34 
09/18/15 VL Undetected!!!  ALT 27  AST 31
12/23/15 VL Undetected!!! [SVR12] ALT 30 AST 26
01/13/16 EOT
04/13/16 - 12 weeks post txt: VL Undetected!! ALT & AST - normal!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Patience on April 15, 2016, 07:07:46 am
Well said, and thrive you will! As time passes the freedom from that loathsome shadow that became part of my every waking moment is more and more amazing. I am beyond grateful for the removal of that burden!
Title: Re: Harvoni 24 week EOT results check in.
Post by: 2Thrive on April 15, 2016, 07:59:11 am
Patience,

Thank you so much! It is wonderful to not be in the shadow but in the light! Grateful indeed!

2Thrive
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on April 15, 2016, 12:01:34 pm
  Well , the results are in. The nurses at My Drs.' office know that I have been waiting for the results and have been worried about Me , so they called Me to tell Me
that I have achieved SVR24! ;D ;D ;D Very unusual in this day and time that the office personell would have that kind of compassion, but it is very reassuring to say the least. :) I need to buy them lunch again to show them how much I appreciate their concern as they do not know Me from Adam! :) Still have to go in Monday for consultation with the Dr. on the rest of the Lab results and pick up My copy of SVR24 suitable for framing ;D
  Here is hoping all is well out there with everyone in Heplandia. Everybody join in the Happy Heppers Conga line one more time! Here We go 8) 8) 8) 8) 8)

 PEOPLE THINK I AM CRAZY ;D BUT I THINK OF MYSELF AS NORMAL WITH A TWIST OF AWESOME ;) ;D
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on April 15, 2016, 12:34:21 pm
Yessss, Tommy! YOU AND YOUR LIVER are
AWESOME!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on April 15, 2016, 12:54:17 pm
 Thank You My Dear!! Right back at You! ;) ;) ;)
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on April 15, 2016, 01:21:43 pm
Tommy

You've had us all on the edge of our seats dalburnit!  Whooopiee!  So glad.  Now you need to go fishin' or something.  Chill out.  I bet you your liver scan in the future turn out incredible and I want to hear about it.
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on April 15, 2016, 01:27:11 pm
 I need to check with My Gastro Dr. about his take on Fibroscan/Fibrosure testing when I go in on Monday.
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on April 15, 2016, 03:24:13 pm
Slats1056, THE CONGA LINE IS IN GEAR!!!!!!  So very happy to hear your news!  Have an absolutely fantastic weekend, you deserve it! The future is bright -- FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on April 15, 2016, 07:01:53 pm
I said it in another thread but it bears repeating ... Congo-rats Tommy! :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on April 15, 2016, 11:21:37 pm
 Thanx All, Beto , FutureThinker , and Philly!

   Beto , I too, am interested as to how the ol' liver will respond! ;D
   FutureThinker , The Future is so bright , We gotta wear shades! :o 8)
   Philly, That is a good one even foR Me! Conga-Rats of Heplandia Rejoice! ;)

 TAKING NAPS SOUNDS SO CHILDISH! I PREFER TO CALL THEM HORIZONTAL LIFE PAUSE! :) :) :) :) :) :)

   
Title: Re: Harvoni 24 week EOT results check in.
Post by: WholeFoods on April 16, 2016, 12:25:56 pm
Hi

As another 24 week Harvoni victor I am proud to be able to post here and to join the ranks of all of us who have fought the fight.  It has been a long journey and many times I read these posts and took encouragement. I have been touched, enlightened, encouraged and inspired. 

We know we embarked on a journey that was not well defined, and that we are the "final trial". It has been gut wrenching, exhilarating, scary, exhausting,tearful and fearful, but yet a joyful ride. Despite my fights with the insurance providers and days of headaches, fatigue and mental daze, I still view myself as fortunate. I have been blessed by these forums, family, friends, a network of traditional and non traditional Health Practioners. I have been under-girded in prayer by many, have trusted my instinct and relied on my Creator for guidance.

After 8 weeks I was virus free and couldn't believe it. When I stopped treatment after 6 months of taking it,  I felt lost without "my friend" Harvoni. I knew as long as I took the pill I was ok, but ending treatment in January I entered into the "unknown".  I was scared and shaken. Now, 12 weeks after treatment, I am still virus free!! My once F4 liver has normal enzymes! That tells me it is healing. I hope when the next 12 weeks are up that I will not only be telling you I have a SVR, but I believe I will be telling you about how my liver has regenerated.

Be of good faith, my fellow journeyers! Miracles DO happen!

And as my moniker indicates....my prayer for all of you is......

2Thrive


HCV since 02/23/1984
GT 1b
03/2002 to 10/2002 Pegintron/Riboviron -Failed
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 Weeks
08/21/15 VL 1,520,000 ALT 39  AST 34 
09/18/15 VL Undetected!!!  ALT 27  AST 31
12/23/15 VL Undetected!!! [SVR12] ALT 30 AST 26
01/13/16 EOT
04/13/16 - 12 weeks post txt: VL Undetected!! ALT & AST - normal!!

I recall that "losing a friend" feeling after EOT, for the same reasons you stated. As long as you're on it, you feel safe somehow. The waiting is the hardest part. I always tried to focus on what I knew already and that is that so many people were going undetected and SVR. That gave me little reason to fear it wouldn't work on me. For anyone on it now and going forward, nothing to fear but fear itself. This is truly a miracle drug, although I still would like to know what causes the lingering bouts of fatigue. While I dislike it, I'm still pretty stoked that I don't have hepc anymore. :-)
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on April 16, 2016, 03:13:57 pm
hear, hear!! 2thrive and WF,

Congrats 2thrive on svr24.  That was a scary one for me.  Like, "I have come this far, wouldn't be just my luck" etc. I forget sometimes the years leading up to the point of being medically cured.  Indeed a long haul, and many did not make it to the new drugs.  F4 was a tough pill, but all the years living with uncertainty, stigma, crazy symptoms, isolation even with support and lots of fear waiting and waiting.  My cirrhosis appears to be reversing (if the scans were true) however, had the cure come a few more years down the line...might have I reached that damage threshold of little or no return?  Lucky, yes.

peace all

Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on April 26, 2016, 01:06:41 pm
Well, it is now going on 34 weeks EOT after a 24 week course of Harvoni.  Iwas clear of Hep C at 24 weeks.  I had my local GI perform an endoscopy as a prerequisite for my Fibrosis study at the U of P.  My local GI referred me to another renowned doc at Penn for a follow up endoscopy.  I'll be getting that done early June followed by another consult along with a Fibroscan and the start of the study.  I'll keep everyone posted.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on April 26, 2016, 01:42:23 pm
Hi  Chino

Did you have a fibroscan before treatment and have you had one post? I am very interested in this study you are involved with.

My pretreatment fibroscan Oct 14 was 27 and my post treatment almost a year after EOT in Mar 15 my score was 33 but I don't feel that was a significant difference I don't think fibroscan is super precise. I assume my cirrhosis at one year post is essentially unchanged.

Is there any medication in this study or are they just tracking patients with cirrhosis post SVR?

Best of luck
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on April 27, 2016, 02:56:30 pm
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!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on April 27, 2016, 03:20:07 pm
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!

Congrats Bob! I look forward to that day myself. :)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on April 27, 2016, 03:25:19 pm
Hi Bob

Good to hear from you my fellow interferon survivor and Harvoni dragon slayer  :)

Congrats on the 1 year plus!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on April 27, 2016, 03:29:40 pm
Thanks Kim :)
I read your story, cool you got on the trial.

Good luck <3
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on April 27, 2016, 03:31:24 pm
Thanks Lynn :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on April 29, 2016, 11:34:30 am
Hi Bob V and CONGRATS!!!!!  I am 9.5 wks into my Harvoni treatment and saw my doctor yesterday following my UD (!) 8 wk lab report.  I have a question:  Are you in a trial to be getting your RNA tested as far out as 58 wks?  When I inquired yesterday re: 24 EOT labs, I was told maybe, or my GP could follow up w/ that lab. What are others hearing regarding how far out RNA will be tested?

Again, so very glad to hear your news! Thanks, FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on April 29, 2016, 01:57:56 pm
Hi FT

I think a lot is on you prior treatment history and liver damage. I was tested at 24 weeks post and I asked to test at my liver specialist annual (44 weeks post) and they said ok. But as a patient with cirrhosis and 3 time interferon null responder and Sovaldi Olysio relapse you can see why.

I feel like a believer now after a year :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on April 29, 2016, 03:11:33 pm
Thanks Lynn, I can see how each person's particular medical condition will mediate that decision.  But I think for my own peace of mind, I'm probably going to want someone to test at 24EOT and 1 year, which I think is understandable after having such a silent disease for decades.  And, as research uncovers more information about these DAAs, that will also play into these decisions.

Would like to know how others doctors are handling this decision. FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on April 29, 2016, 03:27:05 pm
Sure I totally understand the need for peace of mind. Who knows maybe I will have one more test say year five post just to put one last fork in it to know I am done with hep c
Title: Re: Harvoni 24 week EOT results check in.
Post by: Patience on April 29, 2016, 03:54:09 pm
My doc did 12 and 24 weeks post and will do one more at one year. Then it's fork-sticking time.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on April 29, 2016, 04:04:03 pm
Hi Future Thinker
First thanks and I hope you remain UND.

I did the original Interferon tx x2 back in the 90’s, only someone that went through his can relate( LynnK), think chemo…..the stuff was poison to me. Since then I refused and my doc at the time agreed I wouldn’t do any treatment with Interferon in it. I felt fine, so I just got on with my life. I always knew and kind of expected to have an issue at some point.

I got a new GI doc a couple of years ago and he couldn’t understand why I refused to try any of the newer treatments, all had “better” Interferon and started pushing me on it. I said to him and his nurse “listen to me doc if you told me I would die in 3 month if I didn’t start taking Interferon I still wouldn’t take it”  His nurse stopped typing and just looked up and he took a few seconds to respond. Then he told me about S&O, I told him I would do my research and get back to him. I didn’t like the side effects of S&O but lucky for me Harvoni  got FDA approval that Oct. I was in his office the next day and said I want Harvoni, to be honest I don’t think he knew it was approved already. We started the approval process and lucky for me several weeks later I was approved.

I always looked at my treatment as a collaboration between my doc and me. If he wasn’t ok with this I would of found a new doc. I guess I should add I’m an RN so I know the system……You have to understand all of us on the forum that fall/winter were the first real world “guinea pigs” on Harvoni. There was very little to no info on Harvoni so we relied on each other for info and support. The forum had/has some very intelligent people that keep up to date on all that’s HCV.  When the new protocols for DAA’s came out, which I got off the forum I was emailing them to my doc, that included labs. My doc only wanted to do EOT and 24wks post tx. Like everyone I wanted to know if Harvoni was doing its thing so I told him I wanted 5wk lab since the new info said most people were UND by week 4, I was <15. He agreed to do labs weeks 5, 8, EOT, post 12, 24.
With all the newer info this is total overkill. I think I’d just do post 12 and 24 now. My doc was old school so he wanted 24 and 52, he didn’t think 12 was considered a cure. I did 58 because I was too lazy to get it done and my GI doc appointment isn’t until June.

Sorry this is so long but a lots has changed since Oct 2014.
Title: Re: Harvoni 24 week EOT results check in.
Post by: chummy1 on May 11, 2016, 04:04:39 pm
I got my 24 week post treatment lab result yesterday.  Complete SVR and all results are normal.  Hooray, right?  Not so fast.  Prior to treatment I felt normal. 

Since starting treatment and importantly since stopping treatment, I feel poorly.  My list of problems include fatigue, brain fog, hot flashes, losing weight involuntarily (20lbs starting from 190), just not feeling good.  I was high functioning prior to treatment.  Now I struggle to be effective as a family member and at work.  This is difficult!
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on May 11, 2016, 04:20:56 pm
I got my 24 week post treatment lab result yesterday.  Complete SVR and all results are normal.  Hooray, right?  Not so fast.  Prior to treatment I felt normal. 

Since starting treatment and importantly since stopping treatment, I feel poorly.  My list of problems include fatigue, brain fog, hot flashes, losing weight involuntarily (20lbs starting from 190), just not feeling good.  I was high functioning prior to treatment.  Now I struggle to be effective as a family member and at work.  This is difficult!

Congrats on your SVR24, Chummy! At least there is some good news. As for your post-treatment problems, quite a number of us are also in that boat. My life is pretty much destroyed at this point, and I am 9.5 months post-treatment. I was fine and healthy and happy with my life and earning a living when I started treatment 1 year ago. Now many days I cannot make it out of the house. Some days I can't get out of bed. Doctors have been looking at my situation and running blood tests. More doctor appointments tomorrow. Sometimes this malaise wanes enough that I can get a few things done. But basically, I have no life, no health, and at present no prospect of hope on the horizon. Sorry to be such a downer people, but it's where I am at.

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: chummy1 on May 11, 2016, 04:24:28 pm
Kim, I'm sorry to hear that.  Has you condition been getting worse as time goes by or did it start all at once and stay that way?  I'm functioning, just that I have some good days and some bad.  None of my good days are what they use to be though.
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on May 11, 2016, 04:31:44 pm
Kim, I'm sorry to hear that.  Has you condition been getting worse as time goes by or did it start all at once and stay that way?  I'm functioning, just that I have some good days and some bad.  None of my good days are what they use to be though.

It feels worse now than at beginning. But I think that is just because I am getting very ground-down and despairing by it all. I was bedridden for my first 2 months post-treatment, and that was pretty instantaneous. I had been on my feet and going about my business during treatment. So I am probably not actually worse now. Everybody's "symptoms" during their Post-Treatment Malaise/Syndrome are different. And nobody seems to have my symptom cluster at all, which is:

•   fever (100-102.5 F)
•   drenching night sweats
•   enlarged lymph nodes
•   extreme fatigue
•   persistent dry cough
•   shortness of breath
•   iron-deficient anemia
•   low hemoglobin
•   low or borderline red blood cells
•   low platelets and White Blood cells
•   low neutrophils (critically low at present)

Here are a couple of other forum threads where post treatment health problems are being discussed:

http://forums.hepmag.com/index.php?topic=4115.0

http://forums.hepmag.com/index.php?topic=2053.0

kim




Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on May 11, 2016, 04:44:07 pm
KimInTheForest and chummy1

I hope things improve for you guys.

Before Harvoni I felt fine but on treatment I could sleep anytime I wanted. I didn't work so it wasn't an issue. Post tx it took several months to get my energy level back to pre tx levels.
Good luck.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on May 11, 2016, 04:55:44 pm
KimInTheForest

Wow that sucks, sorry.
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on May 11, 2016, 05:18:52 pm
Hi Bob V -- I, too, have a healthcare background and completely agree w/ the "collaboration" aspect of working with our physicians. We, the patients, know best how we feel and there needs to be ample time for us to adequately communicate this to a doctor who is attentively listening --- not typing away on the computer, or reading what's on the computer.  The computers are not going to go away, but there needs to be some human, eye-to-eye dialogue at these appointments. I am repeatedly encouraging fellow forum members to not be afraid to ask any and all questions until they understand whatever the subject is regarding their health.

I am concerned for Kim and encouraging her to get some "new eyes" on her situation if her current medical docs don't have a satisfactory plan. It's never easy going thru all the paperwork and wait to get to a new doctor(s), but it can be a life-saving action.

So glad you have made SVR -- I think 2016 is going to have a very big class of graduates! FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on May 11, 2016, 07:22:32 pm
So bummed seeing post treatment malaise for many of us warriors! We certainly deserve a better break. It does seem that this alien parasite virus does things to some of us if we dare remove it. We seem to be suddenly suffering all sorts of symptoms which are akin to immunity reactions to what can be quite serious diseases.


I am not in great  condition yet but am slowly getting a better handle on my physical life one year after treatment.


For one I suffer horribly from exposure to every day allergens now but it comes and goes. We have 3 cats now so the protein Feld d 1 in dander might have something to do with the fact that I feel like I live in a field of hay full of goldenrod being harvested in a breeze which is pointed straight at me!


I don't experience any other really serious problems, my digestion, CV recovery rate along with key circulation to my limbs and mental acuity are all much better than they were pre treatment.


Overall for 63, I am typical of an overweight individual who craves exercise, healthy diet and the habits of a saint but tends to not listen to the best advice that I preach.


Mia culpa as I gulpa down a my chocolate milk shake with abandon and piggy out ona spumoni!


But back to the point, clearly those who suffer this should be studied more closely post treatment and listened to by the doctors! It could very well be that HCV has replaced certain key functions in the hepatocyte and even enhanced some in those who had the disease long term. The give away is that some who have been cured by a DAA treatment have suddenly developed HCC, quite possibly in response to having their immune system change overnight by removing the virus.


I am not talking about just Harvoni, I am considering here all DAAs that work to quickly remove the virus might affect some of us adversely. I surmise here that if our immune system does not adjust quickly to the changes in liver function, which is predominantly a massive restructure of the hepatocyte cell mass. We might be put at greater risk of attack by common immune reactions. In addition to this a more serious problem with our interferon triggered immunity reactions might not be able to keep up with some minor incidents of tumor cell growth within the liver.


I truly hope the reason why some of us are going through this is not what I have envisioned but some of us having compromised or overstimulated incorrect immune system reactions to everyday allergens, malaises and irritants post treatment is the only answer that I can think of for this problem.


Only time will tell what is really going on here, unfortunately it seems that none of the clinicians and scientists could give a shit about people who their treatments cured yet. We are no longer interesting to them we are no longer patients.


I hope there is a more simple answer than the one I am suggesting I am sure as more and more people show the same problems we will come under scrutiny of the drug companies and they will peddle some pills to get over the post HCV treatment sickness. Gilead or some cuttlefish-eyed investor from Bristol-Myers Squibb might even jump on it and buy it out for a few billion if some brilliant mind comes up with a pill or two in answer to the problems we face.
   
Title: Re: Harvoni 24 week EOT results check in.
Post by: chummy1 on May 11, 2016, 07:36:11 pm
I'm quite certain there will not be a simple answer.  I am making an appointment with my doc to start all of the tests to rule out this and that.  Some of the symptoms could be from serious conditions.  There's no point in getting worked up until, for me anyway, it can be narrowed to something conclusive.  That is my hope anyway, that the cause can be identified.  There have been so many stories of nothing being able to be diagnosed definitively, so people are slapped wit a fuzzy yet questionable (insert name here) syndrome. I can live with the way things are, but not happily.  Time will tell.
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on May 11, 2016, 08:00:09 pm
Hey all,

I feel like I have been chasing my tail on this one.  Post treatment woes, have taken up a whole bunch of our posting time.  This in and of itself indicates that, yea something is going on here.  I agree with chummy, that the answers will not be simple when and if they come; and I also am in Mugwup's camp on the hyper immune idea. 

Truly, we the guinea pigs are the ones that are having to show patience in this process where nobody knows what may come down the line.  Perhaps, it will all be moot before we get the answers because everyone eventually balances out.

For me, there have been little weird health surprises.  Things I have not experienced before treatment or, during.  Example; after a period most recently of sustained "work" stress I developed very tender and inflamed neck lymph issues.  Yes...stress...a virus...CMV/EBV maybe.  However, I have not had the experience in my lifetime of sore swollen lymph nodes for six days without it turning into a cold or flu and I usually hardly ever have sore lymph nodes.

My point is that most of the stuff going on seems to be immune over reactions.  Said it before and I will say it again...decades living with a prolific virus (trillion copies a day) then dead in a few weeks.  Yes Mugwup...might be too quick.  for now I am content to suppose that the real recovery begins at EOT and for some, it might be longer than we hoped.

As for the antiviral causing damage...well...that could very well be.  Question is, who is going to study this?  Or rather...who has the incentive to foot the bill for this study?

 
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on May 11, 2016, 11:25:55 pm
  Sounds to Me like Big Pharma needs to be held accountable for some post Tx. follow ups and health studies. It would be to much to ask for them to do it voluntarily. Will probably wind up in court the way it is going. Lots more info. needs to be forthcoming from them. I am sure there is info. that has not been released or has been suppressed from the general public! Unfortunately, in this day and time it behooves them to cover their asses at our expense. All the while , they are raking in the cash for the corporation. Hey , I wonder what it would cost to get some shares of Gilead?
 
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on May 12, 2016, 01:20:32 am
Just to chime in I feel same as before treatment. I am 58 with cirrhosis. I could and probably should get some exercise and eat better. As my BMI is 30.1 But that being said I feel reasonably well work full time and do my yard work around the house as needed.

I get a little tired from time to time but see above
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on May 12, 2016, 08:47:59 am
I'm like Lynn. 57, cirrhosis, had the virus for a long time. Now clear, I have the usual aches and pains of being close to 60 and my eyesight ain't what it used to be. I don't really have any visible signs of sx of treatment. I have some issues with my platelet count and my INR, but I haven't had a blood test for a while.

But I do feel pretty good and I certainly feel better than I did before I started treatment. I don't say this to belittle anyone having issues. I know there are some people doing it really tough. But I think it's important to give a good news story as well.
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on May 12, 2016, 11:11:31 am
Yes Philly,

The good news needs to come forth along with those more trial-some accounts.  I do not believe that anyone should feel bad about reporting the down issues on this forum and should not be overly concerned about bringing everyone down with them.  We can take it after all we have been through and keeping those afloat that bear a greater burden than most; we gladly support.  The information is important no matter which way it swings.

I love hearing about folks that are feeling fantastic or having improvements, especially when I am nursing temporary wounds.  I encourage more of that conversation coming out of the EOT camp.  In the beginning it did not matter if we were having issues as long as the undetected news turned up for us or our comrades.  The frustration is palpable for anyone past the 6 month cured mark that still must embrace complications.  I think a lot of those folks just stop posting.

All said and done, we are all blessed to have a social media outlet that allows us to cheer, gripe, postulate, joke and even politic the hands that offered cure (we just did not know of the caveats, but if we had we would have marched toward the chance of cure without a second thought).

I think we are at the point where we can all agree that healing and recovery are different for all and that being cured does not equal healed.
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on May 12, 2016, 12:02:27 pm
This is an insignificant question with all the other issues being discussed on this thread right now, but I've put out the question elsewhere on this forum with minimal responses re: decreased tartar buildup during &/or after treatment.  What has your experience been?  Thanks, FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Determined on May 12, 2016, 12:17:26 pm
AMEN!  I came over to this forum because I needed some hope.  I agree that we need the support for our difficulties, but was starting to wonder if anybody feels good after treatment.  Very worried near EOT because I am desperate to find my old self.  Hard truths are better than no truths, but let's hear it all.  Many thanks!
Title: Re: Harvoni 24 week EOT results check in.
Post by: chummy1 on May 12, 2016, 12:25:24 pm
My guess is most people feel normal after treatment.  They get cured and move on.  No reason to come to forums like this anymore.  The odds are in your favor that you will complete the regimen, clear the virus and then lead a normal life.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on May 12, 2016, 12:33:58 pm
My guess is most people feel normal after treatment.  They get cured and move on.  No reason to come to forums like this anymore.  The odds are in your favor that you will complete the regimen, clear the virus and then lead a normal life.
--------------
I have some thoughts on this thread and I'll write something later today. This post is accurate.
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on May 12, 2016, 01:50:51 pm
 It seems that no one recalls the good EOT posts as much as the bad EOT posts. The thing I like about this forums is that We are all adults that can think for ourselves and make our own decisions based on that. I also like that this is not a censured site and all views are allowed as well as debated for the greater cause. As long as You are not trying to shank someone ( in My opinion ) Your posts are just as valid as the next guys!!! I personally love to read the good  stuff and feel good posts as it gives Me a boost knowing other folks are doing well. Unfortunately I am one of the MINORITY that has been having a rough time. I think that if the posts are checked out that the good ones outweigh the rough ones.
 AGAIN , THIS IS MY OPINION. I HOPE EVERY ONE IS DOING WELL AND LIVING UP TO MY PERSONAK MESSAGE!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on May 12, 2016, 01:52:20 pm
OOPS, SPELL CHECK! THAT WAS SUPPOSED TO BE PERSONAL MESSAGE AT THE END!
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on May 12, 2016, 04:14:32 pm
Status report since my 09/30/15 EOT: had quite a bit of fatigue on and off for the first __ weeks. By now, energy level is definitely better than before Tx but not quite as good as during the Harvoni high. Am still getting sporadic, random aches and pains that last a couple of days at most. Have just been weaned off an anti-inflammatory because both the hepatologist and my PCP said the only way to find out whether the aches and pains are EHMs of HCV or a separate diagnosis is to experiment. After 14 days of 1/2 dose, I was nearly ready to cry uncle and go back to a full dose, but I made it through all six weeks of the half dose. Today's my first day of zero dose -- so far, so good.

I realize that, given all my other diagnoses, I didn't expect that Harvoni would bring me back to full health, but only that it might keep my liver from getting worse and might even help it function better. So far, so good on that score, too.

As to whether the people who stop posting do so because they're in great shape or because they're most definitely not in great shape, my guess is that there's some of both.

A very useful discussion -- thanks everyone.
Title: Re: Harvoni 24 week EOT results check in.
Post by: HazelAustralia on May 13, 2016, 04:37:09 am
Hi all,

I'm so sorry - and worried - to hear from all you who are struggling post-treatment. I hope you find the answers and solutions that you need as soon as possible. I appreciate that you share your journeys here.

Best wishes all,

Hazel
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on May 13, 2016, 12:44:02 pm
 Gnatty, You brought up a very good yet not discussed topic on post EOT expectations of returning to full health. I for one know that I will never return too full health and do not have that expectation and speculate that a lot of others believe that the new wonder drugs will do just that! Very good point.
  Just got back from My latest blood draw for the internist Myself. Hoping for some inkling of what is going on inside the old body. Fingers crossed and plodding ahead as usual waiting for the next adventure in medicine ( read that as Old Timers Syndrome )

  LAUGHTER IS THE BEST MEDICINE, BUT YOUR INSURANCE ONLY COVERS CHUCKLES , SNICKERS , AND GIGGLES!! ;D ;D ;D
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on May 13, 2016, 05:09:03 pm
My only hope from Harvoni was that it would by curing my hep c prevent my cirrhosis from progressing to decompensated requiring a liver transplant and if I was not able to get a transplant soon enough my early death.

So on all counts I am very pleased to say the least.
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on May 15, 2016, 12:20:46 pm
For me, Harvoni did it's thing...I eliminated the virus.  As many of you know, for me some significant health changes for the better transpired.  Along with those revelations, lots of quirky health anomalies showed up.  Whatever the source of those things, I intend to try to figure it out and maximize my state of health.  I don't know what full health is.  Alls I know is that it is OK to strive for better health...that is how I am wired and I believe that most of us are wired. 

That post treatment might come with challenges based on either sudden dis-synergy or the drug effect itself, is a valid discussion and will be helpful to the 'cures to be' waiting in the wings.

Most important is the support we have all given one another throughout the process.  When relapses happened along the way, as difficult as it was for most of us to jump in to the conversation, the unlucky hepper was always supported...as were those that had a rough time with side effects and EOT woes.

The virus is behind me (I hope).  In front of me are a few real issues that I am working on whatever their source.
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on May 16, 2016, 10:13:34 am
 Well stated Beto!! ;)
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on May 19, 2016, 09:43:42 am
Hi  Chino

Did you have a fibroscan before treatment and have you had one post? I am very interested in this study you are involved with.

My pretreatment fibroscan Oct 14 was 27 and my post treatment almost a year after EOT in Mar 15 my score was 33 but I don't feel that was a significant difference I don't think fibroscan is super precise. I assume my cirrhosis at one year post is essentially unchanged.

Is there any medication in this study or are they just tracking patients with cirrhosis post SVR?

Best of luck

Hi Lynn.
I have never had a Fibro Scan.  I have volunteered for a 5 year clinical study which will track fibrosis, cirrhoisis, etc..  The preq's. for the study require an up to date endoscopy, blood work along with the Fibro Scan.  The Fibro Scan will be repeated yearly.  I'll know more once I begin the study which is June 14, 2016.  I am also involved in a trial that involves a more accurate and sensitive test than the current AFP.  I relapsed in 2014 after a 12 week course of Olysio & Solvadi.  My AFP soared to 477.  My AFP is now 3.4 @34 weeks EOT and my other liver chemistries are in the normal range.  I'll keep you posted.

To answer your original question(s):  I never had a Fibro Scan ever & I don't know if medication will be involved in the Fibrosis study.  It is my understanding that the June 14th date will establish the baseline for the study going forward.  I do know that there are trials ongoing involving drugs that help to heal a damaged liver.

Good luck to you as well.
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on May 19, 2016, 11:48:28 am
Please keep us posted -- there is still so much to learn, and thank you for helping get the answers.  FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on May 19, 2016, 12:07:29 pm
Ok thanks chino

I also relapsed after 12 weeks Sov/Oly and was later cured with 24 weeks Harvoni 15 weeks Ribavirin. My AFO stayed in the same range though as it had been around 26. My last AFP was 10.6 still slightly out of normal range and my platelets were up from 90 to 111 on my last test so some hopeful signs anyway

Thanks and keep us posted :)

Title: Re: Harvoni 24 week EOT results check in.
Post by: Rosie13 on May 22, 2016, 10:00:51 pm
HI EVERYONE! I have been waiting for the results EOT 24 & so proud to join this awesome club of UNDETECTED's...Mayo Clinic closed my case & we all hugged & that was it! To all the people out there that are thinking about treatment or scared or been told no ...keep on pushing you will get cured. Miracles really do happen!  ;)
Title: Re: Harvoni 24 week EOT results check in.
Post by: beto on May 23, 2016, 10:20:48 am
Thrilled for you Rosie!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: slats1056 on May 23, 2016, 10:49:20 am
  WHOO HOO ROSIE! WELCOME TO THE CLUB! I REALLY LIKE THE PART ABOUT CASE CLOSED 8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on May 23, 2016, 11:47:49 am
Rosie13, LOVE that phrase "case closed"!!!!!!!!!  So very happy for you and I am hopefully on my way to joining the club! All the best, FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on May 23, 2016, 12:04:29 pm
Congrats on your SVR24 Rosie !!!  8)  8)  8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on May 23, 2016, 03:20:26 pm
Congrats Rosie13
Title: Re: Harvoni 24 week EOT results check in.
Post by: Rosie13 on May 24, 2016, 10:56:36 pm
Thanks to all my fellow warriors...I could not have done it without you!Love you all!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on May 24, 2016, 11:18:18 pm
Great news congrats!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on May 25, 2016, 09:11:50 am
Congrats Rosie13. Great news!
Title: Re: Harvoni 24 week EOT results check in.
Post by: brie41 on May 25, 2016, 10:08:33 am
Hi Rosie,

  Congrats!!  It must feel amazing to know to know you are free and clear!!  That has become my motto as of late!  Wishing the same for all of us!  Brie
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on May 25, 2016, 12:32:25 pm
Yay Rosie!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Rosie13 on May 25, 2016, 12:43:29 pm
Looking forward to read  exciting news about the newly cured for all still on tx.It is a surreal time to be close to the pulse of banishing this disease forever. Keep posting your thoughts & worries.I'm staying here ...it's an unfinished blockbuster novel!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Max on May 27, 2016, 01:22:26 pm
I thought I should check in. I have been so busy and feeling so good after slaying the Dragon. March 22, 2016 was about 18 weeks EOT. I had Harvoni for 12 weeks ending November 8 , 2015. Today is May 27 , 2016 and the reason I have time is a Hernia as slowed me down. I forgot I am 61 years old and should take it easy. My only side effect seems to be ringing and buzzing in the ears from time to time. My numbers are really good. I can no longer  sit still or take a nap like the old C daze. Thank you Harvoni for my new life.   8)
Title: Re: Harvoni 24 week EOT results check in.
Post by: gnatcatcher on May 27, 2016, 05:28:41 pm
Way to go, Max! Belated congrats to Rosie (I was on a trip and haven't caught up yet).
Title: Re: Harvoni 24 week EOT results check in.
Post by: Bob V on May 27, 2016, 05:42:48 pm
Great news Max. Congrats.

BTW good luck with the Hernia, been there too.

Title: Re: Harvoni 24 week EOT results check in.
Post by: Rosie13 on May 27, 2016, 11:51:08 pm
Congrats Max! I relate to your activity level....but I gave up the idea of catching  up on all that was left hanging while I had my Harvoni daze. Every day I'm just grateful to be here!

Thanks Gnatty!!!!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on July 18, 2016, 01:47:36 pm
1. 4wk - 12 wk EOT VL status    =   SVR
2. Treatment duration   =   24 weeks Harvoni only -  2/23/15 to 8/10/15
3. tx naive or experienced 
•   Interferon/Ribavirin  -  2003 timeframe  -  unsuccessful, taken off treatment due to no viral load reduction coupled with anemia, low platelet count, low WBC count
•   Solvadi/Olysio combo.  -  spring 2014  -  12 week couse -  SVR  all during therapy, relapsed 12 weeks after treatment
4. Genotype (1a or 1b)  =  1a
5. F1-F4 fibrosis status (6/2016)  =  Meld Score  <9, Child Class A, Fibroscan 18.4
6. Initial VL (date)  =  6 million units
Title: Re: Harvoni 24 week EOT results check in.
Post by: Rosie13 on July 18, 2016, 09:19:29 pm
Chino! So happy for you.....the path was not easy ...you persevered longer than most SVR is yours to CELEBRATE ! Yeah!
Title: Re: Harvoni 24 week EOT results check in.
Post by: AussieRosa on July 18, 2016, 10:21:12 pm
Congratulations, Chino. It feels great, doesn't it. Hope you have a long and healthy life now.
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on July 18, 2016, 10:23:48 pm
All right Chino congrats!!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: chino1969 on July 19, 2016, 05:33:16 pm
Thanks all.  It is amazing how much of yourself you shut down when you have this disease.  I really never thought I would be cured and resigned myself to my fate until my 1st relapse with Solvadi/Olysio in 2014.  After that I decided to be my own advocate.  My local GI prescribed 24 weeks of Harvoni and worked through the 1st denial from the insurance co..  The insurance co. was not going to cover it because they said the 12 weeks of Solvadi/Olysio failed.  My insurance co. referred my case to the Medical Review Institute of America who overturned their denial.  My 24 weeks of Harvoni was approved.  In the interim I sought the services of a renowned Hepatologist at The Univ. of Penn. Perelman Center For Advanced Disease.  I have been seeing him ever since and am enrolled in two clinical studies he is in charge of.  I now have a team that I sought out as opposed to just following the norm.  It put me in charge of my own situation and worked out very well.  I have the benefit of a major university research programs, the consult of one of the best Hepatologists in the country and the local consult of my GI of over 20 years.  The communication flows between the two and I am very pleased with how it all turned out.  I guess the reason I am relaying all of this is to encourage all those out there still battling this disease.  You have to be active and fight by being your own advocate.  This disease is on it's way to eradication.  Never give up hope and never stop fighting.  God bless to all who travel this journey.
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on July 19, 2016, 05:37:00 pm
Good going, Chino! Good on ya, mate!

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Rosie13 on July 19, 2016, 11:03:22 pm
Chino, this thread will save lives.It is hard to be your own advocate when your sick but we stand here cured after doing just that. Empowerment!
Title: Re: Harvoni 24 week EOT results check in.
Post by: Cute on August 29, 2016, 09:28:49 am
Dear community,

Last 4 month I was not so active in this chat. I have to inform that we managed mother's treatment with Harvoni. After long and difficult battle. She has been already cured for 6 months. PCR and blood work are ok.

We closed virus page, but not cirrhosis. Still she has liquid in her abdominal and I pray for her. Doctor still believes that as liver regeneration will continue the volume of abdominal liquid (about 4-5 liters) would decrease. I so hope to see this result. Most wished outcome by me!!!
So far we have observed functioning stable liver, but despite of that liquid level remains high.

I believe in your opinion. You know this illness well rather than anybody, even doctors. What do you think about our chances? Does it possible that liver will regenerate fast? Do you know examples when after good treatment the liquid goes down and liver heals itself? Need your opinion and expertise.

Otherwise, I feel myself desperate and alone. It turns me that despite of that we slayed virus, but failed to restore mother's health  :-[
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on August 29, 2016, 12:00:49 pm
Is it possible for you mother to receive a liver transplant?

There is some evidence a damaged liver may improve with time but there is no way to know for any one person if they will improve. However even if she needs a transplant eventually she no longer has hep c to attack the new liver.

As far as the ascites has her liver specialist suggested any dietary restrictions? She needs to limit salt intake to less than 1200 mg/day I assume she is taking a diuretic to help with the ascites if not her doctor should prescribe one for her

Sorry to hearing your moms continuing health problems. Is she under the are of a gastroenterologist associated with a transplant center? They are best equipped to help a patient with advanced liver disease

Good luck
Lynn
Title: Re: Harvoni 24 week EOT results check in.
Post by: Mugwump on August 29, 2016, 06:34:39 pm
Quote
We closed virus page, but not cirrhosis. Still she has liquid in her abdominal and I pray for her. Doctor still believes that as liver regeneration will continue the volume of abdominal liquid (about 4-5 liters) would decrease. I so hope to see this result. Most wished outcome by me!!!
So far we have observed functioning stable liver, but despite of that liquid level remains high.

I have heard of the slow reversal of ascites when the other functions that clear the fluid are not severely compromised. The key here is if  kidney and essential renal functions are still good, chances are the liver will heal to the extent that normal exchange of fluid in the abdominal space can slowly overtake the level of leakage. If there has been no history of kidney failure then her chances are now very good for a decent recovery if the root cause of the progression to decompensated cirrhosis is gone.

My level of cirrhosis is noticeably improved and my liver is actually slowly shrinking and becoming less stiff. I was very fortunate that I never reached the decompensated state but I was getting close. Today, one year and four months post treatment, I had a full gastric ultra sound and the relative level of portal hypertension and pronounced level of discomfort from distention has reduced considerably, but it took over a year.

Everyone here is pulling for her I am certain. Please keep us in the loop regardless of what happens.

Ditto on the prayers.
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: jakas on August 31, 2016, 01:36:55 am
My news :
SVR 24
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on August 31, 2016, 01:42:49 am
My news :
SVR 24

Well done, Jakas! Congrats! :)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on August 31, 2016, 02:30:48 am
Great news Jakas doing the happy dance for you !!!
Title: Re: Harvoni 24 week EOT results check in.
Post by: jakas on August 31, 2016, 10:44:05 am
Thanks and respect to you guys for helping in the journey. I AM very GRATEFUL for that.
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on August 31, 2016, 01:01:16 pm
Jakas, EXCELLENT NEWS!!  All the best, FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: badbradley on September 02, 2016, 09:56:22 am
Congratulations Jakas!      I started treatment 5 days before you. 12wks Harv/Ribas and I also am SVR24  "CURED"   
To those fighting for treatment, KEEP FIGHTING!

Brad
Title: Re: Harvoni 24 week EOT results check in.
Post by: FutureThinker on September 02, 2016, 12:06:35 pm
Badbradley -- Thrilled to hear the Harvoni/riba was the ticket for you!!!  All the best to you in your new life, FT
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on September 03, 2016, 02:15:21 am
Alright great news BadBradley congrats!
Title: Re: Harvoni 24 week EOT results check in.
Post by: jakas on September 04, 2016, 04:38:05 pm
Badbradley excellent news :)
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on September 05, 2016, 06:46:21 am
Great news you two! Wonderful.
Title: Re: Harvoni 24 week EOT results check in.
Post by: kimlav on September 18, 2016, 12:37:09 pm
Hi everyone,

It is official, I get to join the SVR24 gang!

I found the 8 weeks of Harvoni to be very tolerable with little to no side effects. I felt fine before treatment and feel fine now 6 month later. Having said that, I am concerned for those who cannot say the same and I find myself at this forum every day. I imagine that will continue for quite some time.

A time I thought I would never see has arrived and I am grateful that there really now is a cure. Now to bring down the costs so the masses can be treated and cured. For any Canadians (or anyone) reading this, you may want to sign a Petition at Action Hepatitis Canada which is a group lobbying for treatment for all Canadians.

And to those who continue to suffer from post treatment issues, I am reading and following your stories hoping that these issues resolve and hoping to learn why some are experiencing such after effects.

I can't put into words how valuable I have found this forum to be and thank all who continue to support it and offer their help. I will be around too.

Kim in the Boreal
Title: Re: Harvoni 24 week EOT results check in.
Post by: Lynn K on September 18, 2016, 04:35:36 pm
Hey Kim welcome to the hep c free world!

Congrats on the SVR24!

Lynn
Title: Re: Harvoni 24 week EOT results check in.
Post by: KimInTheForest on October 03, 2016, 10:50:21 pm
way to go, Kim! Two wins for the Kims! ;)

kim
Title: Re: Harvoni 24 week EOT results check in.
Post by: Philadelphia on October 04, 2016, 08:35:43 am
Congrats Kim! So much good news :)
Title: Re: post treatment effects question from old thread
Post by: Mugwump on February 23, 2019, 05:26:25 am
This is an insignificant question with all the other issues being discussed on this thread right now, but I've put out the question elsewhere on this forum with minimal responses re: decreased tartar buildup during &/or after treatment.  What has your experience been?  Thanks, FT
I have brought this old post up for a very good reason. The thread is one that started to show some of the post treatment effects that were concerning and FutureThinker posted one positive one that puzzled me at the time.

My last visit to the dental hygienist went much more smoothly than ones prior to treatment. I commented that since being cured of HCV and having my liver functions and stiffness improve over time, my salivation had returned to more normal levels. The dentist who came in to check out my dentition also brought up the possibility that curing HCV and relieving cirrhosis in progress also had the wonderful effect of normalizing my salivation. This reduces tartar and plaque build up. So yes to FutureThinker the possible mechanisms at work here is confirmed by dental professionals and my experience. Before treatment I had halitosis caused by cirrhosis and related declining dental health. Indeed curing HCV has slowly improved my overall dental health.
Cheers
Eric
Title: Re: Harvoni 24 week EOT results check in.
Post by: andrew j on February 23, 2019, 06:10:22 pm
Hi Eric,

I'm just about to have my teeth looked at.
I can't shut my teeth properly following a rash of extractions, when I had Hep C.
... Weaker teeth, weaker gums ... weaker everything, of course.
It's all strengthened up amazingly!