Relapsed

[Tekelcat]

After 24 weeks of INF, Ribavirin, GS5885 and another Gilead, UND by week 6, then straight into another 24 weeks of INF and Ribavirin, my PCR shows HVC RNA at week 12 EOT. HCV-1a. CC. Very tough year of tx with lots of sides. What now? Hepa says no more INF. Sofobuvir (GS7977) not doing so well with 1a and 1b and not yet tested on relapses. I'm 62, moderate fibrosis prior to tx. I'm tired. What to do?

[Advocate1955]

Gilead won't unblind you for a year and a half?  Wow, that is one of the things that scares me so much about trials.  If it doesn't work, and they won't unblind the study, then it may impact one's ability to participate in another trial or use the next approved treatment.  Best wishes, and keep us posted.  I think willbb is waiting for his previous trial to be unblinded too.
Advocate1955

[frijole]

Wow.  I am so sorry.  Been there with relapse too and know how difficult it is.  Was the UND at week 6 considered late with this trial?  Why was it determined that interferon was your problem, not the trial drugs - so much so that the hepatologist said you could not do INF again?  

I agree with you to stay away from trials wher you may be given a placebo.  The risk of a waste of time is too great.  

I am unclear about your treatment.  Were you UND at week 6 with only the two gilead trial drugs and then went on to 24 weeks with only Riba and Inf?
frijole

[jules2551]

I'm just so sorry you are having to go through all of this!  But I am glad you will have a biopsy done to accurately stage your liver.  That is probably the best thing you can do right now for yourself.  

I can't imagine how taxing emotionally this must be on you but when your feeling better go out and play, have fun, enjoy life.  There is nothing you can do about tx at this point and time in your life.  So go out and live it up and worry about tx when the time comes.

Jules

[Tekelcat]

Thank you all so much. Many hours with my hepa today. No tx options at this time. Pointless and dangerous to repeat INF, he says, as although I cleared,I relapsed and ended up in ER twice with INF side effects. And even if I could tolerate anther round of INF, the second Gilead trial drug was a protease inhibitor or placebo, Gilead wont unblind and tell me if I got the protease inhibitor until the whole trial is over a year or s down the road, so no protease inhibitors for me for now. Hepa says, must treat again within 5 years. Thinks a tailored multi-drug approach based on Sofusprevir (spelling?  GS7977) will be the way to go. How many times have I been told a new effective treatment is just 5 years off? Gonna Fibroscan and biopsy to accurately stage where my liver is at now. Work out what to do or not to do about the T-cell NHL in the lymph nodes near my liver, and live right. Mostly I'm just sad that the emotional and spiritual burden of having HCV has not passed from me.

[pooh55811]

I am very sorry that you have relapsed and my thoughts are with you. I know it must be devastating.

I agree with Advocate and Jules, and my thinking is along their lines of thought. Hopefully you have an experienced and knowledgeable Hepatologist who will manage your care until you can treat in the future with some of the newer drugs.

Please do let us know how you are doing from time to time. Best to you.

[jules2551]

I just wanted to say I am sorry that you relapsed.  I am like Advocate in that I don't know enough about GS5885 to comment.  Wishing you the best in the near future for another try!

Jules