Tomorrow will be my 40th injection, but today my Hepatologist told me I am no longer UND. Viral load was 35. They will keep me going for the two weeks it takes to get the results back from bloodwork drawn today just in case it is a false positive. However my understanding is that a false positive is extremely rare....akin to winning the lottery last night.
I am bummed and trying to stay positive, need to keep the negative thoughts away that somehow I made a bad decision to treat now instead of waiting. It seems testing of non-responders from Incevik with new treatment has not yet begun, only Peg/RIBA and naive studies. So maybe in around 3 years I can try for a third time.
I am 48 with early stage 4 and the first signs of varices.
Thanks to the wonderful folks in this forum and best wishes to everyone going through tx, I don't regret this 2nd try, someday I will beat this damn disease!
i am so sorry to hear this. i am also on my second attempt and at stage 4. let's hope it is a false positive...someone has to hit the lottery; maybe it will be you...keep everything crossed and hope for the best.
Don't give up hope until the results are confirmed.
As for getting into new trials, yes you are quite correct that anyone with DAA (direct antiviral agents) experience are shunned by most trials. I had telaprevir (incevik) about 4-5 years ago and failed as well but that was obvious by week 12 for me.
There has been ONE trial I am aware of that accepted previous protease failures, the gs-7977/BMS-790052 study.
There will no doubt be more, but when the pharmas will get the balls to try it again is anyone's guess. They usually play it super safe and go with treatment naives. Might be a few months before the next one, might be a year or two.
I am very sorry to hear about your apparent breakthrough. You must be terribly disappointed. Who would be after coming so far. Keep taking your meds and don't miss any doses of ribavirin. Maybe there was a mix-up with the lab somehow...Hang in there.
There has never been more hope for cirrhotics then right now. I see no trials with Sofosbuvir (GS-7977) that exclude protease failure patients at least under the exclusions on www.clinicaltrials.gov. (Except phase 2 trials with only treatment naives). As time goes on there will be more phase 3 trials that will include genotype 1 cirrhotics.
You are developing portal hypertension. Early cirrhosis (without much portal hypertension and the resulting varices) is now becoming cirrhosis plus portal hypertension because the scarring is reducing the blood flow through your liver and it is being rerouted through collateral veins (varices).
As long as you are Child-Pugh Class A you should be able to get into Gilead trials that include cirrhotics.
The next Gilead treatment available on the market for genotype 1s with be 12 weeks of GS-7977 + peg-INF + Ribavirin in 2014. It is not that far away if you can stay as healthy as possible. Assuming the trials continue to go well. So there is help out there unlike just a few years ago when options for cirrhotics were poor at best.
So you have a choice to get into trial before that or not.
Meanwhile try stay as healthy as possible. No toxins. Alcohol, prescription or over-the-counter meds such as NSAIDs, vitamins, supplement unless approved by your liver doctor.
If it turns out you did have a breakthrough take time to morn the lost and care for yourself. When you feel renewed again you can always keep up with the clinical trial data.
FYI: I have had cirrhosis for at least 5 years and am on week 12 of 24 treating with Sofosbuvir + Ribavirin. (An Open-Label Study to Explore the Clinical Efficacy of GS 7977 With Ribavirin Administered Pre-Transplant in Preventing Hepatitis C Virus (HCV) Recurrence Post-Transplant-I will be getting a transplant in the next 2 months due to my liver cancer) I was a previous null-responder with peg-INF and Ribavirin. I became undetectable with 2 week of starting treatment. Close to 100% of patients are undetectable by week 4 at the latest. I think only 1 or 2 patients have ever had breakthrough while taking Sofosbuvir. So basically the only patients that fail treatment are relapses after stopping treatment. And remember as of now we are looking at only 12 weeks compared to 48 weeks. Can't beat that.
Thank you to everyone for your supporting words, I love this forum, you guys are the best!
I am encouraged to hear about more trial activity than I thought was out there.
I am reviving one of my favorite movie quotes, from Galaxy Quest:
"Never give up, never surrender"
I'm chiming in here with more hopes that it was a lab mixup. False positives might be rare, but I don't think it's all that rare for labs to get something mixed up. Keep at it and don't give up unless you really have to; you've got lots of people rooting for you here!
I'm sorry to hear about your breakthrough. My husband is also Cirrhotic and also had a viral breakthrough, but his was somewhere around week 20-24, sooner than yours. It is hard to take that news, and hard to get past feelings of "all that for nothing". You did not make a bad decision to treat now. It's just that there is a certain percentage of people for whom the triple txs will not work, and unfortunately you are in that group. Keep in mind that every time you treat, you give your liver a break and reduce the burden on your liver. I am hoping for you that it was a false positive, but the liklihood is that it wasn't and you've had a breakthrough. When you get the official word from your doc, take some time to rebuild your strength, let your counts come back up, and then try to get busy living a normal life not on treatment. It may take a couple of months, but try to keep a positive attitude, get active, eat healthy, and so on. Chances are your doc will want to check your labs about every 3 months and screen for HCC about every 6 months, so you will be monitored closely. Results of trial studies look good, and we hear that Gilead will be applying for FDA approval of sofosbuvir (previously called GS7977) about mid next year. We also hear there will be combinations of sofosbuvir with other drugs that will likely be effective for people like you and my husband who have failed triple tx and have Cirrhosis soon. It will be important for you and your doc to set up a schedule for monitoring to make sure that your liver stays compensated (healthy to do the next treatment down the pipeline) and that you screen for liver cancer and catch it early if it occurs (praying it doesn't).
Hang in there.
been there and done that. 3 months since my failed 3x (boceprevir). you must be 90 day post failed PI/P/R tx to be included in a trial w/ GS7977. I am hoping to start this trial soon.
G1a, in my 60's, cirrhotic w/portal hypertension, C-T and ready ! for some new treatment...you will be too! the new stuff is coming
It is terrible to have the tx fail you...but strangely I was happy to get off the damn 3x drugs....anemic all the way with EPO and Nuep.....but 3 months later I am filled with anticipation for a new go of it.....the Gilead drugs look very promising....of course I would probably take any....but the GS trial is accepting PI tx failures that are cirrhotic....so ....we will see what we see!
my sympathy and hope that you will get better and back up in the saddle a final time to achieve our goal!
That ***** big time,sorry to hear it didn't work out for you.Wishing you the best for your recovery from treatment and regroup until the next round for the new treatments coming soon.Even tho this treatment didn't work you still get some benefits from it.
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