Author Topic: After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE! (Read 754565 times)

Katie · « **Reply #100 on:** May 19, 2015, 07:22:02 pm »

I disagree a bit Mario. Scientific research has to follow guidelines, not only set by the company but FDA and undergoes rigorous scrutiny. I don't believe they pick and choose their results or their methods. Since it is based on facts not emotion it sometimes looks as if they are hiding something or skewing it a bit as we experience it on a personal level. I see the reason for numbers on Charly8's thread to be more of what Mike pointed out where everyone is not posting and agree those who relapse are more likely to continue the forum than those who are successful.

Our forum has many folks who have a wide range of health issues which can affect not only the outcome of the treatment but the negative symptoms and may actually worsen existing conditions. Everything is connected. The trials couldn't possibly have all of those variables included the drug would never get approved for the time that would take.

Although I believe everything folks post, being realistic, people can post anything they want and may not always be truthful, may still be living a lifestyle not conducive to healing and may not have followed the suggested restrictions or schedule which was recommended. In addition to that, everyone has a different threshold for pain and discomfort and what one person feels is minor, may be excruciating for another. I have seen this with people I know. I have a very high threshold for pain which may be the reason I have so many joint issues. If I hurt myself, I'd ignore it and keep on going.

Those of us who started Harvoni when first available, I would think, have valuable information to share for the future, and I am hoping the doctors are tracking and submitting information. The doctors should be objective and aware of medical history which would be beneficial for future treatments and guidelines.

All in all, I am delighted I took the treatment however I won't be convinced I am cured until SVR24. Until then, I am enjoying every day as each day is a gift.

One thing for sure, huge leaps are being made to rid everyone of this disease and I wish everyone the best and will always try and support those on the journey. My heart breaks a little with each relapse, but I remain hopeful a cure is right around the corner for all!

Time to get out in that sunshine!
Katie

connie · « **Reply #101 on:** May 19, 2015, 07:27:48 pm »

I hate that anyone has relapsed but I have hooked up with a few people that have and it has been very beneficial for me... the first thing I did when I found out I relapsed was to call Gilead...I hope anyone that does relapse makes that call.... ... I am glad you say the phase IV testing is going on, I had no idea about that.... I am very interested in seeing this list Charlly8 has gotten together, I think it is a great idea... of course I think we all know that it is not a reflection of all those that have taken the treatment... but I like to see what other people's experience was, how long they took harvoni... how long they had virus... on and on..............
peace to all, connie

OO7GUY · « **Reply #102 on:** May 19, 2015, 07:57:45 pm »

just got my 4 week post treatment blood work and im happy to say still undetected

mario555 · « **Reply #103 on:** May 19, 2015, 08:50:51 pm »

007.congrats! This is a good news for today!

Mike Conwell · « **Reply #104 on:** May 19, 2015, 09:06:04 pm »

OK here we go. I started at a VL of close to 11 mill. I'm now have my 4 week post TX. results and here goes. ALT 24, AST 22, VL undetectable. YES maybe I have beat it. 12 weeks on Harvoni and I believe it's gone. I'm still not feeling good at all but with the virus gone I can only get better!!!! Some say it's no problem but let me tell you for me it was hard and I'm now having a harder time than when on treatment. I hear there are better TX options coming soon. My advise is to wait and see if you can without causing yourself problems. TX is only going to get better now that they know how to fight HepC. By the way I'm stage 3 as far as damage to my liver. I will repost at 12 weeks post TX

Bob V · « **Reply #105 on:** May 19, 2015, 10:11:40 pm »

Mike Conwell and 007GUY

CONGRATS!

Mugwump · « **Reply #106 on:** May 19, 2015, 11:54:52 pm »

Headed for the vampires tomorrow for my first post tx blood draw. Because I am F4, tx experienced and finally took the last pill just this morning all I want to see is another <15 and a good alt and ast reading.

Like Mario I have felt like crap for the last little while. But I must add that the boost that I experienced during the first few months was incredible. So just perhaps as the liver heals we all will experience bouts of weakness and other things that make us question whether or not the treatment worked.

My joints are definitely stiff and there is more bowel disturbance going on very much the same as I felt before treatment so every finger is semi crossed and so are all my toes.. but it hurts like hell!

I do not REPEAT think that these issues are side effects of Harvoni. I firmly believe they are OMS complicated by having compromised liver functions! OMS= Old Man Syndrome

I really hope that my stat can be one that helps up the cure rate we are seeing.

My doctor does not have me scheduled for a 4 week post RNA test like many here but if I am UND currently we will just monitor liver functions and then do another RNA test at 12 weeks post EOT in August.

NOW for the long term fishing plans after I get a wedding invite out of the way. Maybe I will paddle my pontoon boat up to Alaska and see if there are any fish along the way. Now that would be an epic fishn' trip! Might cause the coast guard to have fits though if I didn't file a trip plan first.

Bob V · « **Reply #107 on:** May 20, 2015, 11:13:43 am »

NOW for the long term fishing plans after I get a wedding invite out of the way. Maybe I will paddle my pontoon boat up to Alaska and see if there are any fish along the way. Now that would be an epic fishn' trip! Might cause the coast guard to have fits though if I didn't file a trip plan first.
--------
Mugwump
This sounds fun. Good luck with the labs.

BTW OMS= gonna steal this one.

Bob

Cally Balmoral · « **Reply #108 on:** May 20, 2015, 12:48:59 pm »

I am now 10+ weeks post Harvoni and am starting to finally feel better. Not as fatigued and not as achey. At 8 weeks post Harvoni I was still undetected. Yea!!!

Mugwump · « **Reply #109 on:** May 20, 2015, 02:08:59 pm »

Quote from: Cally Balmoral on May 20, 2015, 12:48:59 pm

I am now 10+ weeks post Harvoni and am starting to finally feel better. Not as fatigued and not as achey. At 8 weeks post Harvoni I was still undetected. Yea!!!

Thanks Cally and Bob I need the encouragement. I was not expecting to feel like hell at EOT. But at least it is nothing compared to what peg+rib did by knocking my hemoglobin for a loop and putting me in hospital with leg craps that needed a shot of morphine to relax and deep lumbar steroid injections just so I could work again. My strength is better than it has been in years but my stamina is down and I generally feel like hell.

I was hoping to be recording, performing and working by now but the joints in my hands are far too stiff and I am straining to play. Right now there is no way I could even use a knife to prepare foods professionally because of the way my hands and joints are hurting.

Eric

Cally Balmoral · « **Reply #110 on:** May 20, 2015, 02:29:28 pm »

Nobody even lets me near a knife, as I am so shakey. But I'm with you.... the peg+rib was the worst. But with Harvoni things are finally looking up. Had 2 iron infusions that has helped a lot. Also deep breathing and drinking water....lots of it. Good luck Eric......Cally

lporterrn · « **Reply #111 on:** May 20, 2015, 02:30:22 pm »

This has been a very interesting topic to follow. Thank you for starting it Charly. I want to also encourage people to share their Hep Stories http://www.hepmag.com/hep_stories.shtml It is another way we capture real life info. I am especially looking for stories from men and people who have completed the new treatments, regardless of outcome.
Thanks

Katie · « **Reply #112 on:** May 20, 2015, 03:05:27 pm »

You made it Eric and I am anxiously waiting to hear good results! It's been a long, bumpy trail, especially for the 24 weekers.

Have fun at the wedding and then off to the water and the fish! We have had good Chinook fishing here already, which is really early. It usually doesn't kick in until Memorial day weekend or a bit later and they are catching them right in front of my house (1/4 mi away, up a hill). I feel fish fever coming on and my smoker is ready! Our King Salmon derby starts up this weekend, for 3 weekends in a row. It is always an exciting time for us.

Cally: I am about 10 weeks post too, and am getting some energy back. Glad to hear you are feeling better!

Lucinda: Thanks for the site and I will definitely check it out!

Hope everyone's week goes well!

Katie

Mike · « **Reply #113 on:** May 20, 2015, 05:20:06 pm »

Regarding FDA approved drug/medical research and clinical trials: The models, methods and statistical analyses for these studies are the gold standard that all scientist try to emulate. You can be assured that the numbers reported in the clinical trials will mirror the real world numbers of the population studied.

This is because the research has to be replicated to confirm validity. Once a study has been replicated, and the same results are statistically confirmed, that research is valid.

The reason I point this out is that 90%+ of those completing a Harvoni protocol will be cured.

90%+, however, is not a 100% and there will be some who will fail treatment.

The important thing to remember is that there are new, more effective drugs coming down the pike.

Unlike the old days, when patients were warehoused for decades (I was warehoused for 15 years), the golden age of Hep-C treatment has arrived, and these new DAA are real game changers!

Best wishes, Mike

Lee · « **Reply #114 on:** May 20, 2015, 05:38:00 pm »

Wow, that is pretty shocking. You would think Gilead (or someone) would be keeping tabs on us for years to come to find out if any long term problems arise.

I asked my doctor about that on Monday, "Is there any chance we are going to have some sort of problems down the road as a result of taking this treatment?", and she just shrugged.

I guess once the drug companies get their $1,000+ a pill, they don't really care what happens after that.

Not to be so negative - I am incredibly thankful for Harvoni right now - just hope there are no BAD surprises somewhere down the line!

Lee

Cally Balmoral · « **Reply #115 on:** May 20, 2015, 05:39:55 pm »

Thanks all for the encouragement. I hope that we all get our lives back. I had a liver transplant 10 years ago and had hoped that was the end of the hepc. But it was back in 6 mos. But with Harvoni its going to be different for all of us I hope. Being positive and sharing with each other, in my mind, is the most important thing for all of us.

Sam1224 · « **Reply #116 on:** May 20, 2015, 08:02:39 pm »

I managed to get my lab results 1 day before seeing the Dr.

3.5 wk undetected post treatment
16 weeks Harvoni
tx naive
Gt 1b
F4 fibrosure 12/14
3million vl 12/14

mario555 · « **Reply #117 on:** May 20, 2015, 08:36:03 pm »

Congrats 1234. I am happy for you! Keep up with the good habits for another 8 1/2 weeks!

Katie · « **Reply #118 on:** May 20, 2015, 08:51:58 pm »

It's a beautiful day to do a Happy Dance for Sam, Mike and 007 and anyone else I may have missed! Congratulations to all who are on the road to a cure, and we all are hopeful that an even better treatment comes along quickly for those who haven't been as lucky, this time around.

Blessing to all

Katie

Mugwump · « **Reply #119 on:** May 20, 2015, 10:06:18 pm »

Quote from: Lee on May 20, 2015, 05:38:00 pm

Wow, that is pretty shocking. You would think Gilead (or someone) would be keeping tabs on us for years to come to find out if any long term problems arise.

I asked my doctor about that on Monday, "Is there any chance we are going to have some sort of problems down the road as a result of taking this treatment?", and she just shrugged.

I guess once the drug companies get their $1,000 a pill, they don't really care what happens after that.

Not to be so negative - I am incredibly thankful for Harvoni right now - just hope there are no BAD surprises somewhere down the line!

Lee

Lee I would not be concerned about long term problems with these medications. The reason is simple they do not modify or attach to anything other than HCV RNA. Certainly it can be said that while the medication is in the system some effects happen and there is a reaction to the functional levels in the metabolism of the liver and kidneys that can cause blood pressure changes. However there is absolutely no reason to assume these changes are permanent or dangerous long term.

The liver is truly amazing it reacts to substances in the blood and if the substance is not a useful component of the blood it discharges it.

I encourage you to learn and study the facts about what these meds are and how they work and are discharged by the system. The facts are all readily available on line including the chemistry details and all the relevant studies. One thing I will say about Gilead, they are very transparent in their approach to disclosure about their products they are not snake oil peddlers like some who push branded products for every little ache and pain a human has

My mother had a prescription written for her by our family doctor in early 1962 for morning sickness. It was pushed to him by a shady fly by night pharmaco that had political pull in Ottawa and did the usual kick back routine to keep the med on the list long after the med had been pulled in England in spring 1961.

Thank God we could not afford to fill it at the time, otherwise my sister might not be as healthy as she is! It was for thalidomide but under a trumped up brand name that sounded completely innocuous.

I carefully looked into the data before going on this med because at the time the approval was not finished yet and the other choice I was given and approved for was Solvaldi/Interferon for 24 weeks with the possibility of adding rib at 12 weeks if the VL level was still high.

After seeing the high incidence of relapses happening with genotype 1a tx experienced F4 patients with this treatment, I was very pleased when Harvoni received approval so quickly.

Mikee · « **Reply #120 on:** May 21, 2015, 11:33:00 am »

4 week undetected, 12 week post treatment undetected, 12 weeks treatment, treatment experienced, genotype 1a, fibrosis 1.3 metavir, pre treatment viral load 2.800000

mario555 · « **Reply #121 on:** May 21, 2015, 12:16:12 pm »

Super Mikee. Congradulations!

Valance · « **Reply #122 on:** May 21, 2015, 07:19:11 pm »

Started Harvoni 8 week treatment on 12/29/14. 12 week EOT - Undetected! Yeah!!!

Cally Balmoral · « **Reply #123 on:** May 21, 2015, 07:48:56 pm »

Congrats Mikee and Valance.

FutureThinker · « **Reply #124 on:** May 21, 2015, 08:58:13 pm »

Hi all, I'd like to clarify some points of my post on 5/19 re: Gilead and post- treatment data collection. I in no way meant to insinuate that Gilead doesn't care about us now that they are making a profit, or that they are snake oil peddlers. I, too, have had plenty of time since my diagnosis in '11 to follow the development of HCV treatments, and read, read, read and ask lots of questions.The ION trials showed a very high rate of SVR and I believe this to be accurate data. But as Mike pointed out, the SVR rate is ~ 90+% per trial outcomes. It's that other +/- 10% that we still are learning about. I want this virus eradicated more than anything else, as there are so many of us infected world-wide..... I want my life back!! But we also need to be realistic and inquisitive when issues come up. The bradycardia medicine interaction w/Harvoni issue is a perfect example; there will likely be more drugs added to the "do not take w/Harvoni" list as time goes on. This is the learning curve we are still on, even with good, sound data from the studies.

I was surprised there is no requirement by the FDA for post-market followup and I wanted to share this with our community, in addition to pointing out the importance of this forum in providing resources and information that are not available elsewhere. I highly commend Charly8 for starting his "study" for us! And I also highly commend everyone, members and moderators alike, who are taking their personal time to support, educate & inform us about this virus, its effects and its destruction. I am grateful to be able to communicate my fears, questions, frustrations & information with the only group I've met who truly understand. I hope this clarifies what I tried to convey in that 5/19 post. Thanks, FT

MEG · « **Reply #125 on:** May 22, 2015, 12:40:23 am »

Hi all...I posted this on another thread before I realized that it's this thread that was designated for post treatment results..

I changed my sig. that gives more details....

My 4 week EOT labs were wonderful....got the results today..

Undetectable. Ast/Lft's haven't been this low since I was in my 20s...Thanks so much everyone for being here...!! I'll keep updating at the 8 and 12 week EOT...Best to all.

MEG · « **Reply #126 on:** May 22, 2015, 12:52:55 am »

@Katie

Hi Katie..I read your post up thread about people experiencing some serious problems after finishing Harvoni...is there a thread where people are posting about it?

I'd love to learn more....thanks. It sounds like you're feeling better--hooray!
Meg.

MEG · « **Reply #127 on:** May 22, 2015, 12:54:56 am »

Congratulations Mikee and Valance...thanks for letting us know. It gives those of us behind you much inspiration...
Meg.

Mugwump · « **Reply #128 on:** May 22, 2015, 05:05:49 am »

Meg fantastic!! Do something special for yourself it is important. Shoes if you have the yen or dollar or credit card LOL, chocolate whatever it does not matter. Heck if I get the news that I am UND at EOT next week I might even just go out and get a new fly reel.

Being on the 24 week tx has been a stretch and I am not even sure about my current liver panel from last month I requested it but never got it. It all means very little until I reach at least 6 months being free from this curse, IMO if you are F4 and have failed treatment in the past it is better not to get too upset if you do not reach SVR. So I am taking it one step at a time that way I can prepare for any news regardless of how things go. This disease has made me very pragmatic but I will never let it get me down again!

Eric

mario555 · « **Reply #129 on:** May 22, 2015, 07:56:31 am »

Worried as hell... After 24 weeks of treatment, my EOT blood tests were weak. My ALT was still over the maximum (but only by 1 point...) and I still feel pinching in my liver. I'm expecting results for my VL 2 weeks after EOT in the coming days. Starting to be scared!

workingonit · « **Reply #130 on:** May 22, 2015, 11:22:06 am »

Hello everyone. I just got some good news from my Dr. this morning. 12wks post treatment of 12wks of Harvoni, I am undetected. I am almost in disbelief after all the past failures! Everyone on this forum are truly warriors! Dr said I was cured. We will do another one in 6months for my benefit. I will continue to keep up with everyone's progress! All the best!

MEG · « **Reply #131 on:** May 22, 2015, 02:05:35 pm »

Hi Eric and Mario

Thanks so much for your kind words and I am rooting for you to get SVR.......don't underestimate the power of this drug. I was sick with cold viruses, bacterial sinusitis, was not exercising---at all---and I still am undetected 4 weeks post treatment.

Harvoni, imo, did it all by itself with no help from my immune system.

Sending you healing thoughts and prayers. Please keep us posted.

@MarioI'm sorry to hear your liver is still pinching. Have you felt any improvement since before Harvoni tx? I think re: your lfts...I'm not surprised that someone like you with F4 to have normal liver enzymes even if your negative. Your liver is going to need some time to regenerate enough fresh and healthy cells to get you there...Hang in there and keep taking care of yourself....I changed nothing when coming off Harvoni---continued eating cleanly, no raw sugars except for a little xylitol in my organic decaf. Chicken, eggs...did it help? I don't know but I felt that doing everything in my control to keep me negative would prevent the guilt/remorse if I relapsed and had gone on a "foods that I miss and love" binge!

Best,,,Meg.

mario555 · « **Reply #132 on:** May 22, 2015, 03:25:49 pm »

Thanks Meg. I actually changed my diet naturally. Since starting the treatment, my habits have changed without me intervening... I used to eat like crap, pizzas, fried foods, etc... I was committing suicide at a slow pace! I wanted out of this disease one way or the other. This is the reason why I said I had no choice with going with Harvoni, I was slowly dying.
Since I started my treatment back in November, I started making healthy choices. Just last week my wife took a pizza at the restaurant and I asked to have a salad with goat cheese, nuts, and cranberries. My wife thought an alien had taken over me! I appreciate the smell of fresh tomatoes, green peppers, etc.. This is something that happened gradually over the last 6 months.
Although the 24 weeks treatment appears to punch through everything (Rav's, 282T, etc..) I might be worrying for nothing but, I want confirmation so my life can be based on something else than Hep C
Anyway, good luck to everyone and for the ones still on treatment, make sure to invest whatever amount of money necessary to purchase additional bottles of the product. Don't let administrative insurance pricks decide your treatment for you....

Katie · « **Reply #133 on:** May 22, 2015, 04:21:46 pm »

Mario, We've all been on this journey together and are here for you. I had issues post treatment and still do AND I was detected at EOT, but cleared when I was tested at 7.5 weeks, so never give up hope.

You have been very faithful and doing all the right things so keep a positive attitude. At EOT I had and "ache" in my liver area, which also could have been my gallbladder, but it is gone now. Totally gone for well over a month! Things slowly are improving but I still have a very low energy level and endurance is not there. Part of this is from the long daylight hours as it messes with my sleep cycle and that may be more of my problem than the treatment. I like to think that is really what's going on.

We all get nervous and scared during the waiting period, and my imagination went off on it's own. When I came back detected I was bummed but knew everything was SO much better and then we found the study on people clearing weeks after treatment ended so I became positive again and I DID clear. Amazing!! My next test is the end of June so the doubts will more than likely creep in again but each time it gets easier.

We are all here for you!

Katie

Katie · « **Reply #134 on:** May 22, 2015, 04:29:00 pm »

Hurray Meg! I'm doing my Happy Dance for you!!!!
Great news on all of your results!

Here is the thread on the side effects post treatment. Hopefully you don't have any but it helps to know you aren't alone if you do. (scroll through the comments)

http://forums.hepmag.com/index.php?topic=2053.new;topicseen#new

After thinking about my lack of energy and having no endurance, I am starting to blame it on the long daylight hours as it really messes with my sleep cycle. I have a feeling that is the real culprit and small subtle changes are still occurring and they are all positive!

Welcome to the waiting train and try not to focus on it; just enjoy the beautiful summer and each and every day!

Katie

Mugwump · « **Reply #135 on:** May 22, 2015, 04:51:40 pm »

Quote from: mario555 on May 22, 2015, 07:56:31 am

Worried as hell... After 24 weeks of treatment, my EOT blood tests were weak. My ALT was still over the maximum (but only by 1 point...) and I still feel pinching in my liver. I'm expecting results for my VL 2 weeks after EOT in the coming days. Starting to be scared!

Ditto. However this time around at least there are more treatment options coming down the pipe fairly soon, hopefully they won't be 1000 bucks a day for 24 weeks. But with Gilead paying 11 billion for the rights to sofosbuvir I doubt that they will be less expensive than Harvoni except for one that I have heard about that is not being done by Gilead or Abbey or Lily. The problem of costs also happens to any of the companies using methods associated to Lily and a few other mega corps that hold a swack of process patents.

You can bet that any new company that comes up with a miracle pill will just be bought up by one of the major players so I would not count on a reasonable cost for the new meds happening. But enough politics.

I will ask my GI if he is involved in any clinical trials this time around...But if it gets in the way of fishing this year it might be a hard choice! At least this time around I am not moping and weak and in need of steroid shots and morphine just so I can walk and bend over like I was in 2005 after the first go round treating this curse. The last thing I want is to go back to using a cane or worse only be able to fish from a boat!

Keep your stick on the ice Mario eventually Toronto or Montreal will win the cup!

All bets are off with Vancouver though knowing the management there their answer will be to go out and trade for something like the Hanson brothers just to keep the stands packed the blood on the ice and the TV ratings up!

Greetings
Eric

MEG · « **Reply #136 on:** May 22, 2015, 08:08:11 pm »

@Mario

Quote

Just last week my wife took a pizza at the restaurant and I asked to have a salad with goat cheese, nuts, and cranberries. My wife thought an alien had taken over me! I appreciate the smell of fresh tomatoes, green peppers, etc.. This is something that happened gradually over the last 6 months.

Haha, I was shocked when I began craving veggies. It's cheese I am most craving these days. Because it's fattening and some say dairy causes inflammation, I've cut it out of my diet. Just today at Costco when I walked down the cheese aisle....sighing...

Hang in there. It's so hard not to think about it because it is important--- but the truth is that this moment is all we really have. This moment that I'm choosing to write back to you. The moment you are reading this. That's it. I could have a heart attack in a few moments...My husband died too early from cancer. I can honestly say that I lived my life most to the fullest during his final year. Indeed, I've continued to give it my best but I get off track more often than I'd like.

I hope the weather where you are is cheer-inspiring, Mario Seeing the initial flowers blooming and watching the bees delight in their nectar has been particularly joyful for me this year...

MEG · « **Reply #137 on:** May 22, 2015, 08:13:56 pm »

@Katie Thanks so much for dancing with me!! It's pretty surreal because I moved to where I am living now last year and only 2 people here know that I have hepC. Yesterday I got together with a friend who doesn't know and it was weird to not be able to share this joy....

Thanks for the link...the tinnitus is most notable for me. As you know, I was exhausted, sick throughout treatment and that is slowly getting better as viral season is passing.

Ahh--the long daylite hours. I keep forgetting. Do you used black-out shades? As someone who hasn't experienced such long days, it's a reason I'd someday come to Alaska in July but I imagine living it from year to year could be a challenge. Too much of a good thing! How do the flowers do?

I'm so happy you are still around and giving all of us so much knowledge and support----thanks so very much, Katie.

Bituman · « **Reply #138 on:** May 22, 2015, 08:44:17 pm »

Congrats Meg, so happy for you! The monsters you've been battling since your early teens are finally gone. You. Beat. Them. Way to go!

Bob

MEG · « **Reply #139 on:** May 22, 2015, 10:16:19 pm »

Bob!!! There you are! So nice to "see" you. Yes---they hung on for dear life until Harvoni the giro-terminator came along.;-)

When is your 4 EOT date?

Bituman · « **Reply #140 on:** May 23, 2015, 06:57:27 pm »

Quote from: MEG on May 22, 2015, 10:16:19 pm

Bob!!! There you are! So nice to "see" you. Yes---they hung on for dear life until Harvoni the giro-terminator came along.;-)

When is your 4 EOT date?

Next Friday, 6:30 AM I get my 4 week post treatment blood test. Every other time they have posted liver enzyme tests by 10 AM and VL results by 8 or 9 PM all same day. Of course, this probably will be the time they delay!

I haven't had much time to ponder my VL. Last Thursday I had dental surgery (ouch!) and quite a bit of travel, including next week. I'm riding a lot this weekend. Tonight is a night mountain bike ride in McDowell Mtn Regional Park east of Phoenix. About 100 of us will wait until dark, strap on lights, and bash around the desert for a couple hours. The weather here remains spectacular, i.e., unseasonably cool. But the oven will come on soon.

Hope you are gradually getting your strength back and can get rolling soon. Looking forward to your 12 week post test results. I'm sure you have killed the monster for good!

Bob

Kate101 · « **Reply #141 on:** May 24, 2015, 01:23:13 am »

Request Kate101

1. 4wk - 12 wk EOT VL status 6wk - undetected
2. Treatment duration 12 weeks
3. tx naive or experienced exp
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status (date) F2
6. Initial VL (date) 1.5 mil

Headaches and fatigue plus many others. Not unbearable but add everything together and it has been a bumpy ride. Cant wait to feel Great again but mental state in much better

Katie · « **Reply #142 on:** May 24, 2015, 01:56:47 am »

Here's my Happy Dance for you Kate!!!! I've been waiting to hear from you and am Happy tonight! Congratulations on being victorious! May your strength and health improve quickly!

Katie

mbara · « **Reply #143 on:** May 25, 2015, 02:42:56 pm »

I am asking this question for my husband. He has finished his 12 weeks and his number was under 12 but still 'detectable'. He jus had his 6 weeks blood work and his AST and ALT numbers have gone back up. We can't seem to find any info on what this might mean and the doctor won't do the test for Viral load until 3 months Post Treatment. Has this happened to anyone else? We want to know so we can move forward with more treatment if necessary and we are both very scared.

mario555 · « **Reply #144 on:** May 25, 2015, 02:49:56 pm »

Order a VL test and pay it yourself if needed. You should know what is going on right away. The unfortunate news is that retreatment at this time doesn't have as much success. If his hep c under control, he should wait next year for retreatment (my opinion)
I'm in the same boat, waiting for confirmation...

mbara · « **Reply #145 on:** May 25, 2015, 03:14:22 pm »

Thanks for the quick response. Does anyone know if it is not unusual to have higher ALT and AST but still be undectable after 3 months?

Lynn K · « **Reply #146 on:** May 25, 2015, 03:31:31 pm »

Hi

These meds are very new so not a lot of info. Could be different things could cause an increase in ALT/AST maybe just the removal of Harvoni.

When you said his numbers went back up by how much have they gone out of normal range?

You asked your doctor to do a viral load and they refused to consider it? That is unfortunate on their part. At least to see what is going on with the liver tests.

Has your husband treated before and does he have cirrhosis?

Best of luck to you both

mbara · « **Reply #147 on:** May 25, 2015, 03:40:01 pm »

Thanks Lynn. The numbers were 190 and 108 and the Ferritin was 605. This is his first treatment and he was border line cirrhosis as last test. I'm not sure if this is right but I believe it was 11 and he was told 12 was the beginning.

He just turned 58 and we're not sure when it was contracted but suspect the early 70's.

mario555 · « **Reply #148 on:** May 25, 2015, 03:42:17 pm »

Lynn K. Your approach is much better than mine! Get more information before talking, it's not always my best quality...
On another subject, I just received my VL2. I am still Undetectable!! I know 2 weeks is not much but it is aiming in the right direction! I am not doing a Happy dance, only a few happy steps!!

mbara · « **Reply #149 on:** May 25, 2015, 03:47:28 pm »

That's great news! I wish you all the best and thanks again for responding. It takes some of the sting out to be able to talk to someone even though I'm not the one with the disease. We've been together 42 years, hard not to worry.

Lynn K · « **Reply #150 on:** May 25, 2015, 03:51:37 pm »

My ALT/AST have always been while not treating around 60 give or take never seen them above 100 any time since diagnosed in 1990. I have never had my ferritin level checked but I think high iron can also cause problems for the liver as well as having a high BMI of he has some weight issues.

So it looks like he could have other factors that can effect his liver in addition to the hep c.

Not familiar with the numbers 11 and 12 was that a fibrosure blood test or something? I haven't had that one. My cirrhosis was diagnosed in Jan 2008 by liver biopsy.

I am 57 and likely got Hep c in 1978 while stationed in Germany when I was in the Army.

I would ask his doctor for their thoughts about his tests.

Good luck

Lynn K · « **Reply #151 on:** May 25, 2015, 03:55:50 pm »

Great news Mario!!!!

I did not have a week 2 post test but will be having my 4 week post tx test on June 1 so in one week hope to know by June 7th or hopefully sooner.

What day did you finish treatment I remember we were close my date was May 4th

Congrats and happy dance for you!

mario555 · « **Reply #152 on:** May 25, 2015, 04:51:19 pm »

My last pill was on April 27. I did find the treatment hard towards the end, 24 weeks is long...
Originally, my doctor wanted only a 24 weeks test so as to save costs (Canada). I argued, pleaded, would have cried if required and got him to give me a test during my doctor's appointment (2 weeks post). I also received a order for a test whenever I want (12 weeks?). Finally, the hospital screwed up and called me this morning for another VL test which will be 4 weeks post treatment!! God does work in mysterious ways....
Best of luck with your test

Mugwump · « **Reply #153 on:** May 25, 2015, 05:59:59 pm »

Quote from: mario555 on May 25, 2015, 03:42:17 pm

Lynn K. Your approach is much better than mine! Get more information before talking, it's not always my best quality...
On another subject, I just received my VL2. I am still Undetectable!! I know 2 weeks is not much but it is aiming in the right direction! I am not doing a Happy dance, only a few happy steps!!

Mario I am very happy you have the word and it is the good one! I am still sitting here on pins and needles! My doctor as well is just doing HCV RNA and the clinic seems to be tight lipped about my liver panel and has not returned my calls yet so I am sweating it to say the least, they must be busy as hell is the only explanation I can fathom.

If you are Italian go and get a nica spumoni and biscotti witha espresso and damn the torpedoes! A little sugar ain't gonna hurt.

Best news I have heard seeing that you are in a very similar boat to my situation!

eric

Katie · « **Reply #154 on:** May 25, 2015, 06:26:02 pm »

Quote from: mario555 on May 25, 2015, 03:42:17 pm

Lynn K. Your approach is much better than mine! Get more information before talking, it's not always my best quality...
On another subject, I just received my VL2. I am still Undetectable!! I know 2 weeks is not much but it is aiming in the right direction! I am not doing a Happy dance, only a few happy steps!!

I am doing a Happy dance for you Mario! You are well on your way and I just know, you've defeated the alien monster! Spoil yourself in some little way and enjoy the good news.

Katie

MEG · « **Reply #155 on:** May 25, 2015, 11:02:35 pm »

@Mario Wooo-hooooo! Yours was the first post I saw when I logged in....it's a sign of good news continuing!

How fun that your doc's office mess-up is working out to do a 4 week VL...there are no coincidences?

Stay Undetectable!
Meg

MEG · « **Reply #156 on:** May 25, 2015, 11:04:37 pm »

Bob(bitumen), I'll be thinking of you on Friday. We began fairly close together..

Another chapter to close, sealed shut, forever...

Thanks for your good wishes. Indeed, since the w/e, it's like a switch went on and my body feels much better. I may even be able to take a gentle bike ride this week...

Stay active and healthy, Meg

MEG · « **Reply #157 on:** May 25, 2015, 11:08:00 pm »

@Eric(mugwump)

Quote

My doctor as well is just doing HCV RNA and the clinic seems to be tight lipped about my liver panel and has not returned my calls yet so I am sweating it to say the least, they must be busy as hell is the only explanation I can fathom.

Eric, I'm sorry. I can't recall if you've already had your 4 week EOT VL? What's making them keep tight lipped about the liver panel.

I hope you get answers soon, now that the holiday is over...keep us posted. Sending you positive and healing thoughts. The wait is so hard....

HCVDX30 · « **Reply #158 on:** May 25, 2015, 11:59:35 pm »

HCVDX30

1. 4wk UNDETECTED - 12 wk EOT VL status UNDETECTED
2. 12 WK Treatment (HARVONI) duration 10-22-2014 TO 01-13-2015
3. tx naive or experienced NAIVE
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status F-4 (CIRRHOSIS) 08-15-2013 LIVER BIOPSY
6. Initial VL 6.38 LOG 10 RESULT 07-24-2014

DX 1995 HCV exposed 1971. Currently all Liver Function Tests are normal as of 04-21-2015. Age 67.

MEG · « **Reply #159 on:** May 26, 2015, 12:05:02 am »

HCVDX30

Congratulations!

Mugwump · « **Reply #160 on:** May 26, 2015, 09:32:33 am »

Quote from: MEG on May 25, 2015, 11:08:00 pm

@Eric(mugwump)

Eric, I'm sorry. I can't recall if you've already had your 4 week EOT VL? What's making them keep tight lipped about the liver panel.

I hope you get answers soon, now that the holiday is over...keep us posted. Sending you positive and healing thoughts. The wait is so hard....

I got my panel results today and they are normal but climbing a little since March. Both in the low 40s and no excess iron load. The problem is the only lab here in bc that does HCV RNA has a bad case of indigestion so the magic UND at EOT is delayed until next week some time but my clinic nurse and I both think there is no reason that 24 weeks of treatment should not have cleared me.

I don't care like I said on another thread, where I am going fishing there is no cell service and even if I still can't get the magic word by then I am going to spend some quality time away from civilization come hell or high water! Low alt is not a good thing either it is a natural function of the liver to exchange cells and my BP, renal functions and all the other stuff that gets wacked by cirrhosis are all perfectly normal. So is my TSH, the tinnitus is backing down, no headaches and I am playing and studying very difficult classical guitar pieces just fine.

I just worked stripping and waxing floors for 6 hours and I am not feeling too bad. Before I went on treatment there is absolutely no way I could have worked in fact I was starting to have to use a cane again because of weakness in my legs. I was also starting to get nervous about driving a vehicle because of the debilitating aspects of cirrhosis my thinking was being effected and I was tired all the time!

So I still have all my toes and fingers crossed but I will not allow my self to feel certain until a 24 and then a 52 week UND comes in. I don't trust those little beasts they have a way of hiding in the body.

Thanks for the encouragement
Eric

mario555 · « **Reply #161 on:** May 26, 2015, 11:28:29 am »

Mugwump. Happy to see other 24 weekers who are finished with their treatment. What date was your last pill?
Your doctor is right in telling you that 24 weeks blow all cases 99% of the time. The only negative note on this was an article suggested to me by Lynn K. It states that people with heavily compromised livers (advanced cirrhosis) only have 85% chances of clearing the virus. It was sobering!
My side effects are slowly receding.
Good luck to you with your upcoming results!

nicole_1234 · « **Reply #162 on:** May 26, 2015, 02:33:39 pm »

Just got a return call from my nurse after I left a message asking if my 12 week vl post tx came in. She left a message saying "my test results are normal" which I do believe means UNDETECTED. I've tried to call her back several times to just confirm and hear the words "you are cured", I guess I'm in disbelief. I should have a note sometime from my doctor today, hopefully it will sink in!

debham · « **Reply #163 on:** May 26, 2015, 02:41:58 pm »

Nicole that's wonderful news. I pray and hope I'm in your shoes too. 4 more weeks of treatment and then 12 weeks of the waiting game.
How are you feeling? Do you feel any different?
Deb

nicole_1234 · « **Reply #164 on:** May 26, 2015, 02:50:52 pm »

Deb, praying for you too! Yes I'm feeling pretty great. Most symptoms are gone I think from tx and hep c. I don't have those crashing waves of tiredness anymore. But I do think my liver has some healing to do.

Katie · « **Reply #165 on:** May 26, 2015, 03:27:39 pm »

YAY Nicole!!!! So glad to hear of your results and that you are feeling good! I had a 8 week test so they wanted to wait for a 16 week, which is the end of June. This was becauyse I was detected at EOT however UND at 8 weeks. I think we have this girlfriend however, I am not truly celebrating until SVR24 is reached.

Have a wonderful, healthy, rest of your life and take care of yourself!

Katie

nicole_1234 · « **Reply #166 on:** May 26, 2015, 03:34:14 pm »

Thanks Katie! It's so amazing you are UND 8weeks after being detected at EOT. I'm so relieved and happy for you. Also I asked my doctor why a few people were clear at 12 week post on Solvaldi/Olysio and then relapsed at 24weeks and she assured me Harvoni is completely different and not to worry. So like you I will feel the best at 24week but I'm going to be pretty confident these next 12 weeks that this worked. You should be too you are at 99% right now!

Katie · « **Reply #167 on:** May 26, 2015, 03:51:30 pm »

I hear you Nicole. My doctor wasn't aware that could happen either and the entire office staff was cheering! Comes to be, 3 of us were detected but not countable at EOT and all three of us cleared after 8-12 weeks. I think there were fragments of non viable virus particles still floating around. Just my guess, but we are seeing relapses with some who appeared to clear as early as 4 weeks into treatment. Hard to make sense of it so we will just wait and see. I still am tired and don't have much endurance, but I really think it has more to do with the long daylight this time of year. I sleep really good but just not long enough!

It's always good hearing from you so keep us posted and I'll be thinking of you!

Katie

Mugwump · « **Reply #168 on:** May 26, 2015, 04:49:11 pm »

Quote from: mario555 on May 26, 2015, 11:28:29 am

Mugwump. Happy to see other 24 weekers who are finished with their treatment. What date was your last pill?
Your doctor is right in telling you that 24 weeks blow all cases 99% of the time. The only negative note on this was an article suggested to me by Lynn K. It states that people with heavily compromised livers (advanced cirrhosis) only have 85% chances of clearing the virus. It was sobering!
My side effects are slowly receding.
Good luck to you with your upcoming results!

It is because Harvoni was approved before the clinical trial 24 week tx long term SVR result finals were in. Still one hell of a better option than a Peg/Solvoldi routine. I will take 85% any day of the week in Vegas! Besides the side effects were a cakewalk and I am much better off than I was before TX to say the least.

So even if it comes up snake eyes again for me, I will still sing and play and most importantly fish and write. However I will limit work stripping floors and hard night time work to what and when I am capable of doing instead of working my brains out cooking and doing advanced janitorial the way I did when I recovered from the last treatment. Finding work ain't an issue for me to say the least. That is why I shot my contract then drowned my cell phone I guess, I put cell phones and contracts on about the same level as a famous mystic in Russia that they had to shoot and then drown to get rid of!

If I do not reach SVR life ain't over I will just get even and finish writing a satire musical comedy about the cold war that I have been working on for about 15 years. I am looking for a decent librettist to collaborate with but they all seem to be dead like Emanuel Schikaneder or otherwise occupied. Many who write music have a difficulty finding song writers so I have to do it myself. The musical score is not the problem the libretto is however.

All the best Mario, I took the last pill last Tuesday and had blood drawn the next day so the wait is up over 10 days now for HCV RNA results in BC another pain the butt side effect of Harvoni treatment I would guess??

Eric

mario555 · « **Reply #169 on:** May 26, 2015, 05:23:27 pm »

EOT tests are not terribly informative because of the wide range of results seen here (detectable at EOT but clears later, UND at EOT but relapse, etc). I just had a 4 weeks test yesterday and that one should be very interesting!
In New Brunswick the wait for results is a full 2 weeks also. Finally, I like your attitude with what the future holds for you. You are definitely easier going than me... Must be my accounting background where we seek certainty,or maybe I'm just a worrywart...

Mikee · « **Reply #170 on:** May 26, 2015, 08:17:37 pm »

The wait is because of a worldwide shortage of the test kits. I also had to wait 2 weeks for my 12 week post treatment Hcv RNA. But I was pretty happy with the results!

nicole_1234 · « **Reply #171 on:** May 26, 2015, 08:48:26 pm »

So hear it is

Nicole_1234

1. 4wk UNDETECTED - 12 wk EOT VL status UNDETECTED
2. 12 WK Treatment (HARVONI) duration 12-03-2014 TO 02-25-2015
3. tx naive or experienced EXPERIENCED
4. Genotype (1a or 1b) 1a
5. F1-F4 fibrosis status: N/A NO RECENT TEST
6. Initial VL 650,000 Sept 2014
7. 12 week post UNDETECTED

MEG · « **Reply #172 on:** May 26, 2015, 11:55:07 pm »

@Nicole It's so wonderful to see all your numbers looking perfect!

@Eric Your posts are so inspiring. You're a great writer and conveyor of your ideas...Write that book!

I wouldn't expect your liver to have low nor even mid-level ast/alt. It will take a while to heal.....In the meanwhile, enjoy your fishing and know that your posts inspire us....
Meg

Mugwump · « **Reply #173 on:** May 27, 2015, 03:21:09 am »

Quote from: MEG on May 26, 2015, 11:55:07 pm

@Nicole It's so wonderful to see all your numbers looking perfect!

@Eric Your posts are so inspiring. You're a great writer and conveyor of your ideas...Write that book!

I wouldn't expect your liver to have low nor even mid-level ast/alt. It will take a while to heal.....In the meanwhile, enjoy your fishing and know that your posts inspire us....
Meg

My liver panel is in mid level low 40s. So it is fine again and churning away exchanging cells at an accelerated rate as it heals. Levels were down to the mid to high twenties at week 4 and slowly came up as treatment progressed. But the reality is that my liver is large from cirrhosis and my muscle mass is very large compared to most individuals. Not to say there ain't no fat associated with my 100 kilos on a big bone 175 cm frame, but there is more muscle than fat. I am built like a low land gorilla and can still climb up and out of some difficult canyons on some BC rivers where you have to do it on all fours!

I think I must be a reincarnated miniature grizzly or somethin' LOL

HMM I have a hankering to eat a nice smoke cooked west coast fish.. it should be on the menu again very soon. LOL Like this 4 lb plus beauty we fire cooked 2 years ago about this time of year! The video link on another thread was of another smaller one that I released a few days previous. This fish was not reviving very well so I decided it was time to eat one rather than feed it to an Osprey which is what usually happens on the rainbow trout lakes if a fish takes too long to recover and flops around for more than 10 minutes before it recovers. I have a video of a young but mature Bald Eagle being harassed by a nesting pair of Ospreys competing for fish on Heffley lake near Kamloops but it is huge and takes too long to upload to the tube with a shaw cable connection that limits your your upload bandwith! Otherwise I would link it.

That time on the pond we actually had a hard time finding fish small enough for the table and 3 of us to eat in one go. And I don't believe in feeding the real bears when I am in the bush like some crazy would be inexperienced anglers wind up doing, either intentionally or not if they keep too much fish hanging around camp. This can be a huge consideration when thinking about how you approach fishing and a real incentive to learn catch and release technique here in BC and in some places in the States for that matter.

Well enough for now and let us not get over concerned about our test results they can be very misleading and are not a death sentence by any means.

But it is wonderful to see the 12 week UNDs coming in and my spirit is lifted like an Eagle in the wind when I see others reach these important milestones!

Eric

angelina · « **Reply #174 on:** May 27, 2015, 09:20:19 am »

Hi. I am reading this and very scared. I am still on treatment. 8 weeks Harvoni. Self paying. I thought I bought a 99% cure and with all the relapse on 8 weeks course I am feeling down. I feet the criteria for 8 weeks course and very scared of relapse.
Initial load 700 000 IU. Treatment naiv. F0 A0-1. Recently diagnosed. Geno 1b.

dragonslayer · « **Reply #175 on:** May 27, 2015, 09:28:39 am »

Quote from: angelina on May 27, 2015, 09:20:19 am

Hi. I am reading this and very scared. I am still on treatment. 8 weeks Harvoni. Self paying. I thought I bought a 99% cure and with all the relapse on 8 weeks course I am feeling down. I feet the criteria for 8 weeks course and very scared of relapse.
Initial load 700 000 IU. Treatment naiv. F0 A0-1. Recently diagnosed. Geno 1b.

Angelina, dont get thrown by these numbers reported in this thread. .I offer up these two posts from earlier in the thread from a forum moderator to ease your anxiety some:

http://forums.hepmag.com/index.php?topic=2665.msg21888#msg21888

http://forums.hepmag.com/index.php?topic=2665.msg21891#msg21891

mario555 · « **Reply #176 on:** May 27, 2015, 09:50:25 am »

Angelina. I was supposed to self-pay my whole treatment and had reserved $85,000 Canadian dollars for 12 weeks. I was then told I'd have to go for a 24 weeks treatment which brought the total cost to $ 170,000. This is a ridiculously high price! So I thought: '' If my daughter needed the money for her health, How long would I hesitate to cure her?''. My children are all grown up, the house is paid so why not invest in the breadwinner? I was already at F4 and wanted a cure as close as possible to 100% because I would be hard pressed to try again later! My wife and I had a discussion and it was decided that all efforts should be put into my ''survival'. I was lucky, most of my costs were paid by insurance and Momentum but, the money was there if something got screwed up...
My advice is : ''A bit more medicine will not be harmful, a little bit less will cause me major problems''. Given the fact you're already deep into it, I would go for one extra bottle. No matter what happens next, you'll have done everything in your power when required. The Lord will handle the rest.... You could try to talk to your insurance company to know if they could pay for a bottle (deep discounts) and then sell it to you? What about Momentum for a ''special deal'' on the third bottle? I also had negotiated with the local pharmacy and was able to get a $2,000 discount per bottle; it's worth a try!
Good luck to you!

Roger · « **Reply #177 on:** May 27, 2015, 08:05:12 pm »

I got my 12 week EOT results today - UND!

1. 4wk - UND / 12 wk - UND
2. Treatment duration - 12 weeks
3. tx naive
4. Genotype 1a
5. F3 fibrosis status - 11/21/2014
6. Initial VL - 313,593 11/21/2014

Sam1224 · « **Reply #178 on:** May 27, 2015, 08:20:56 pm »

Is there an updated tally?
Also, are there instances of UND post 4 week that subsequently relapsed? Just curious.

dragonslayer · « **Reply #179 on:** May 27, 2015, 08:25:20 pm »

Quote from: Sam1224 on May 27, 2015, 08:20:56 pm

Is there an updated tally?
Also, are there instances of UND post 4 week that subsequently relapsed? Just curious.

Sam, SVR4 is about 98.5% predictive of SVR!

nicole_1234 · « **Reply #180 on:** May 27, 2015, 08:37:01 pm »

Angelina don't be too worried. You have a very low vl to start and healthy liver, also I heard somewhere 1b had a better rate of SVR than 1a. I would trust more the stats of Gilead trials than this forum, this is just a small group of people. Please remember a lot of people who are successful in treatment may not even report it.

And Roger congrats!!!! That's great news!

angelina · « **Reply #181 on:** May 28, 2015, 02:06:13 am »

Thank you all for your advice and support. My hope is also that 1b is less resistance than 1a. I read a lot about this and even according to the studies 1b relapse rates are much lover than 1a. Is there anyone with 1b here who relapsed???
Mario I appreciate your advice. The same thoughts started to visit me after this forum but the thing is that we only started the treatment as it was recommended only for 8 weeks despite doctors advice to wait if can't afford it now. But we thought its definitely a cure. We used our reserves and can't pay a third bottle at the moment, that's why I am scared. And now I am on the treatment already and no way back.
Congratulations to all who got SVR12!!!
And pls keep positive those who relapsed. You will all get cured from the next try!!!

Dandelion · « **Reply #182 on:** May 28, 2015, 09:12:51 am »

Hi Angelina,
Since you ask, I reply. I am 1b, diagnosed '92 after bl trans '80. I started 12wks 1-8-15 w/ a VL of 6.5mil., and F2-F4 Fibrosure score. I've been on a restricted diet and supplement protocol 22yrs and do all the liver healthy things, but despite UND at wk 4 and wk 12 of Harvoni, I had a VL of 510000 at 4wks after end of treatment.
I'm testing again in JUly for my 12wk EOT VL. I am also staying positive as all my LFT's and metabolic profile, and other labs and ultrasound are normal. Is what it is. Some relapse. Some with variants or polymorphisms relapse and some with variants don't. It's hard to predict or understand. I'm giving my liver a rest and considering other options for now.
My advice to you, is to stay positive and know most are curing or going UND on Harvoni. Best to you!!!!
June

angelina · « **Reply #183 on:** May 28, 2015, 10:55:24 am »

Thank you June. What is polymorphism? I read so much new stuff in the forum like some special genes that makes it harder to cure. Is it one of this genes?

Dandelion · « **Reply #184 on:** May 28, 2015, 02:06:56 pm »

I don't have a med background Angelina, but yes, I'm just referring to the variants ... funny thing about the genetic variants is that they do not seem to definitively determine outcome... it's all pretty confounding ....

Lynn K · « **Reply #185 on:** May 28, 2015, 07:02:16 pm »

Hi angelina and welcome
Long answer for polymorphism

http://en.wikipedia.org/wiki/Polymorphism_%28biology%29

Short answer genetic variants of something in this case some of us for example carry the Q80K polymorphism which made us harder to be cured with the old treatments with telaprevir, Interferon, and Ribavirin.

However it seems that the new generation of medicines like Harvoni these varations do not seem to matter anymore and do not appear to have an effect on the outcome of treatment.

Have you seen any of the clinical trial data for the 8 week treatment results for your genotype 1b?

http://hcvadvocate.org/hepatitis/factsheets_pdf/GT1_Harvoni.pdf

For genotype 1b, without cirrhosis, who are treatment naive with pre-treatment viral load less than 6 million the result was 98% SVR for the 1a people it was 93%

You really have an excellent chance of being cured 98%

angelina · « **Reply #186 on:** May 28, 2015, 11:05:26 pm »

Lynn thank you for the info. Clear now. And i looked into the data very precisely before starting treatment. I think out of 215 it was 43 with genotype 1b and 42 reached SVR12 with only 1 relapse. But here in the forum with real people numbers look very different. But lets hope for the best!

Lynn K · « **Reply #187 on:** May 29, 2015, 01:25:59 am »

Yes power of positive thinking most will cure!

charly8 · « **Reply #188 on:** May 29, 2015, 10:30:20 am »

Finally got my 4 week SVR results!

Charly8
1. 4 wk post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - Tx Experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - Fibrosure- F3 (Dec 2014), Fibroscan F0-F1 (Mar 2015)
6. Initial VL (date) - 1.05 Mil (Dec 2014)

mario555 · « **Reply #189 on:** May 29, 2015, 11:46:40 am »

Super! Charlie8. You appeared to be a fairly heavy case to be cured with only 12 weeks. I guess lots of people here will be encouraged by your results!
Harvoni sure works in mysterious ways!

dragonslayer · « **Reply #190 on:** May 29, 2015, 02:32:29 pm »

Quote from: mario555 on May 29, 2015, 11:46:40 am

Super! Charlie8. You appeared to be a fairly heavy case to be cured with only 12 weeks. I guess lots of people here will be encouraged by your results!
Harvoni sure works in mysterious ways!

Mario, why do you say that? His latest test, the fibroscan, showed minimal damage, and his viral load is only 1mil. Looks like he's an ideal candidate for the 12 wk treatment according to Gilead prescribing info: Treatment-experienced without cirrhosis: 12 weeks

Charly, Congrats on SVR4!! Youre just about home

mario555 · « **Reply #191 on:** May 29, 2015, 02:50:59 pm »

Oupps. When I read his stats, I thought he was F3 from a fibroscan. It was fibrosure which I know nothing about! Being F3 on a fibroscan could easily be a F4 because of the higher difficulty in grading properly higher levels of the disease (from what I read here). Sorry for the poorly thought comment! I am still amazed at this new medication compared to what I went through before. I really can't wait to see Charly8 update. Anyway, I am happy for you Charly8. Hope to have similar news in 1 week (my VL4 results)

dragonslayer · « **Reply #192 on:** May 29, 2015, 03:03:29 pm »

Mario, Yea.. Its the variability and unreliability of these non invasive tests that keeps me from doing one. My biopsies have been good with the most recent one about 2 yrs ago. Id like to get an updated condition of my liver. Progression has been exceedingly slow for me and there's no real reason to be believe thats changed.. But being svr, Id rather not have another biopsy.. My doctor's office recently acquired a Fibroscan machine, but the last thing Id want is for the inherent inaccuracy of this machine to give me a higher staging than my biopsy did if its not accurate... I'll probably request one anyway since at the minimal and maximal ends of the scale is where it's accuracy is supposed to shine.

Bituman · « **Reply #193 on:** May 30, 2015, 11:15:23 pm »

I updated my signature. As of yesterday morning, 6:30 AM MST, four weeks post EOT, virus remains UNDETECTED and I feel fine.

Next milestone lab work is 29 July, which would be 12 weeks post treatment. Do we declare victory at 12 or 24 weeks? I can't seem to find it, but I recall a statistic that if you have a SVR at 12 weeks, then there is X percent that you will have a SVR at 24 weeks. What is that percentage? Is four week response predictive of anything? Anyway, I seem to have a good jump on a SVR.

Healing vibes to all.

Bob

dragonslayer · « **Reply #194 on:** May 31, 2015, 12:32:30 am »

Bob, with Harvoni, SVR12 is 99.8% predictive of SVR! And SVR4 is 98.5% . Youre probably home free .

http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf

Karen3717 · « **Reply #195 on:** May 31, 2015, 12:39:28 am »

Congrats, Bob! Excellent news. I have 5 more Harvoni pills to take. I will have EOT test done next Friday. Was still detected @ 8 wks, so keeping fingers crossed for UND at 12 wks & then SVR!
Karen

MEG · « **Reply #196 on:** May 31, 2015, 03:04:49 am »

@Bob

Congratulations. I'm delighted to come over here tonight and see your wonderful results.

Your wife and family must be thrilled with you...

All the best, Bob.
Meg.

Bituman · « **Reply #197 on:** May 31, 2015, 08:19:41 am »

Thanks Dragonslayer, I figured you would help me out. I really appreciate the reasoned and scientific approach you have brought to this board.

Special EOT healing vibes to you Karen. Thanks to Dragonslayer and others, we now know that being detected at 8 weeks will probably still result in a SVR. Good luck on those last five pills. I think you're going to make it!

You're right Meg, my wife and others are real happy. I had the occasion to take a 30 minute drive with my company's COO and even he congratulated me! As you know, I wasn't shy about telling people I have hepatitis. I'm especially happy for you too. There's a common bond among those of us battled cancer as young adults and were left with another monster to face down. I have spotted a few others on this board with similar stories. Hope you are gradually feeling better and with more energy, and can get your knees in the breeze soon.

Continuing healing vibes to all!

Bob

Marnie · « **Reply #198 on:** June 01, 2015, 04:58:42 pm »

1. 4wk EOT VL status = UND
2. Treatment duration = 12 weeks Harvoni (Jan-Mar 2015)
3. Experienced
4. Genotype 1a
5. F1 fibrosis status (Jan 2015)
6. Initial VL 1.1million Dec 2014

Marnie

MEG · « **Reply #199 on:** June 01, 2015, 05:34:33 pm »

@Bobz(Bitumen)

Quote

You're right Meg, my wife and others are real happy. I had the occasion to take a 30 minute drive with my company's COO and even he congratulated me! As you know, I wasn't shy about telling people I have hepatitis. I'm especially happy for you too. There's a common bond among those of us battled cancer as young adults and were left with another monster to face down. I have spotted a few others on this board with similar stories. Hope you are gradually feeling better and with more energy, and can get your knees in the breeze soon.

Indeed---that long nightmare is over....! May you continue to be blessed Bob...Meg

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