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Retreating after relapsing
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Retreating after relapsing

Hello, I am posting this question as I have not been able to find the answer.  I just relapsed last week from the Roche Study R1626 with Polymerase inhibitor 1000mg twice a day, Pegasys 180 iu (reduced  after several months by 25% due to sx) and 1000 mg Riba per day, I am a Geno type 1A,  138 lbs transitioning into cirrhosis.  I would like to retreat right away.  The doctor says I have to wait 6 months.  I can understand waiting until my blood counts are better, WBC , neutrophils low, lymphocytes very low due to study drug, platelets low however does anyone know how long you have to wait between treatments?  I have been told that the Peg and Riba alone only give a 50% SVR for a Geno 1 however I was not able to take the full dose for the full 48 weeks due to the problems with the study drug.  When I asked the doctor about retreat he said I would have to wait at least 6 months and that there was no point in trying the SOC as I had been on a very strong drug and relapsed, he says I need to wait for an even stronger drug.  I thought I was going to a  good GI, Hepatologist, later learned he is a good clinical researcher,  he pushes trials for everyone.  Sorry off track, found out I relapsed last week, still trying to absorb this since I was UND at 8 weeks and continued that way till pulled at week 43 of 48 due to low lymphocytes and neutrophils.
I would appreciate any help as I am hoping that 6 months is not how long I have to wait to retreat.
Thank you
Dee
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4 Comments Post a Comment
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Hi Dee...check your email.

Will repeat some of those things here.

Dee, we were in a Phase II trial .. in my arm, I got half the INF for the first 12 weeks and then beginning around week 23 starting getting INF dose reductions with one week riba reduction at week 14.  Then got pulled at Week 34.  While the trial drug showed promise for it's results, it was pulled 12 weeks early (or even earlier for some) at Week 12 instead of Week 24.  

I say that to say that I disagree with your clinician's assessment that there isn't a point to trying SOC.  Our dosages were far from being anything close to SOC and the administration of the trial drug was not even according to the trial expectations.  

If you don't know what arm you were in, please find out - that will be valuable information to know what your INF dosages were.  What was your history of dosage reductions on this trial?

Also...I'd strongly recommend that you take time to take good care of you right now while you search out a competent hepatologist and get a second opinion.

As for retreating options ... I would rather see what arm you were in and your history of dosage reductions before commenting further, however I disagree with your clinician's initial opinion.

Take care, Dee.

Trish
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I also relapsed and was early cirrhosis.  The treating doc wanted me to get back in the game. I took the time to consult with a university liverhead to get his input and suggestions for re-treating (meds, dosage, duration etc).  I'm glad I took the time to get my act together for a successful second go around. In addition to getting good advice on treating I also took the time to get physically ready, align other things in life (work, family, stuff around the house and so on).  Th break turned out to be about 10 months, but I was ready to get it done.  The moral of the story is to be prepared because you are probably heading for a longish haul.  HCV is slow so you should have time to get your poop in a group. I think that there is is little benefit in jumping back in immediately unless the break was much shorter (like a couple of weeks)
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Just wondering if you tried infergen, I failed twice on interferon and went to infergen was cleared at 20 weeks and have been cleared since. Please dont let your doctor take you off the meds for wbc or rbc there are rescue drugs for this. good luck joe
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Thank you all for your comments.  Trish I  started Feb 1st 2008 was in Arm A 1000 mg R1626 twice a day 180 iu Pegysus once a week and 1000 Ribavarin every day until two months in to therapy where the 180iu was dropped by 25%, 4 weeks on that then back to the 100% of the 180 iu till the numbers dropped so from May till November I was on a reduced dose. I took the R1626 (that is just what I call it) for 16 weeks before I was pulled from that of 25% of 180 iu per week.
Thank you all for your comments, I am going to find a new doctor who cares more about patients and less about trials
Have a great weekend everyone!
So glad to have this forum to come to
D
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