When to stop treatment????

[Mimi4141]

Hello again!  I just wanted to thank everyone for being here.  The information we have gained has been so helpful!!!

Today the doctor (he was coving for a regular GI) was telling my husband he should think about stopping treatment.  He is stage 4 cirrhosis, Hep C 1b.  Pre treatment viral load was 2 million, 12-week viral load 275, 19 week viral load 59, all done with the Hepamax.  The doctor said that since he did not clear at 12 weeks his chances were less than 5% for the medication to work. He is on pegasys 180 mg + ribavirin 1200mg a day.  

I do know that it was not good that he was undetectable at week 12, but I did not know that his chances were that bad.  The doctor did not seem very positive about his response to treatment and stated that he was not a very good candidate for treatment from the start due his platelet count.  However, his platelets were within normal limits the last lab draw.

Does any one have any information on what he should do?  He has gotten very sick, but is a fighter and refused to stop treatment.  The doctor said that he would not test the viral load again until week 48.  I thought that after someone reaches undetectable the treatment would continue for another 26-28 weeks, or something like that.  

Any suggestions or input would be greatly appreciated.

Airborne's wife

[jmjm530]

I'll also piggyback what someone else stated and that it's my understanding that the 5 per cent figure given is much too low since your husband did achieve the 2-log drop. Maybe someone else like Willing will come by with the exact study data but my guess it's closer to 20-25% with 48 weeks of treatment and better if he extends. In any event, as a stage 4, the odds -- while still important -- have to be weighed against the risk of not treating. In other words, even if his odds are less than 50% that doesn't mean he should stop.

-- Jim

[jmjm530]

NY:  For example he said there is NO such thing as a '60 week' course of treatment.
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Other than for some study protocols, I respectfully disagree with your doctor. My treating hep Dr. -- same league as Dr. J. -- had me treat for 54 weeks which was based on the formula 48 weeks past non-detectible. He also was more than willing to let me go 60 weeks if I so chose. Point I guess is that it doesn't have to be 48 or 72 weeks only -- that's just what some of the trials used. BTW when are you seeing Dr. J?  Hope this finds you well.

-- Jim

[friole]

I also want to chime in that I don't think your hubby should throw in the towel.  It might be time for another consult -- and most probably extended treatment, but he is a responder.

Cuteus and NYG are right -- there is no 36-week after clearing protocol.  It was just one study, and a recommendation that was made in that study.   Still, that is what I am doing - adding 36 weeks to my 20-week clear PCR test. Since my 12 week was 40IU and my 20 week was clear, standard treatment is still 48 weeks.  I am trying to just buy a little insurance.

Jim, I guess you are referring to the Berg study that compared  genotype 1s treating for 48 and 72 weeks.  In the grand scheme of things there was not much difference in the results.  However when you pulled the data apart and analyzed all those not clear at 12 weeks, the results were differnet. Seems like 6000IU/mL was the magic number -- if your PCR was under 6000 at 12 weeks, extending to 72 weeks increased your percent of SVR.  There was no mention of degree of liver damage in the study

[MrsOckert]

I had an interesting conversation with my dr yesterday.  I'm scheduled for a PCR at week 48 (after the shot) and I asked him why wouldn't we want to do it 4 weeks later to see if I relapsed.  The next one he's doing is at 24 weeks post TX.

His comment was "Why would you want to know at 4 weeks?  With the problems and sides you've had I would not put you back on the medicine."

Wow, he caught me really off guard with that one.  I already knew I didn't want to do the tx again, but it's always nice to know I can change my mind if I want to.  I'm not sure why he said that....I haven't even told him about half my sides.

I didn't even think to ask what he would recommend if I'm relapsed at 24 weeks.

[sunspot]

Why not split the difference and ask for a 12 week PCR? I would think that an UND would give you a great peace of mind.

[MrsOckert]

I would agree with you.  Unfortunately, I have one of those dr's that does it "this way" and won't consider changing "protocol".   OH well.