16 weeks of tx for geno 2b?

[artgal]

I am very hesitant to post this question as I know many, many of you amazing people have a much rougher road than I have. Being a geno 2b, grade 1, stage 0, age 46 female I know I am about as lucky as it gets. BUT, I do not want to be on tx any longer than absolutely necessary. Maybe this is not the best day to post as I have a raging headache, an itchy rash over 80% of my body, mouth sores and feelings of nausea and fatigue regularly. I've only done 4 shots of pegasys so far and I continue to be very wary of the tx. My doctor has worked with a number of patients of my genotype and if they clear at 4 weeks he allows them to stop the tx at 16 weeks. Those of you who have been around the last month and a half know I was extremely ambivalent about beginning tx. Fatigue and depression being my only hep c related symptoms for a virus I most likely have had 30 years, I was very fearful about the long-term effects of losing my thyroid, retinol damage, etc., and perhaps clearing the virus but dealing with other problems as a result. My doctor says that there have been a number of studies showing people with my geno may not need the 24 weeks. The fall 2004 conference on hep c (clinicaloptions.com has all the research from the most recent conferences) and the April 2005 conference both list studies with the 16 week treatment option.
Does anyone (other than Oakey who posted yesterday) have experience with or knowledge of the 16 week option?   Again, I apologize for complaining when many of you are struggling so admirably with much more than I.

[bluepeng]

For Artgal, I wouldn't project too far out about getting off the train at 16 weeks.  If you take it a week at a time, you can hopefully go the distance.  It's funny, because I was concerned about stopping treatment a week  early.  I met with my doc and he said my last shot was June 16th.   I have it as the following week because I started on January 11th.   He said, it's ok and he said "colloquailly we use 24 weeks".   I kind of feel like coming this far .. I can certainly do another week, but will it really make that big of a difference?   See how I feel when I get there.

[cuteus]

I read the same thing as Layla, every one that started is factored in the results. That is why I think the G1 numbers might be higher if only those who completed were factored in.

[rifleman]

Actually, my G/F counted the weeks and I will take my last tx the day after Thanksgiving, 3 weeks before the 40th b-day.  That is some welcome news.  
I was told that sometimes they treat 2b for 12 weeks.  That would be nice, but if I have to make a choice I will go for the full 24.  That is easy to say as I have not started tx yet, but 6 months is not a lot in the scheme of things.
If you kill something, it can't hurt to kick it a few times when it's down, just to make sure. . .
DJL

[honey1616]

Rev,,,Hey,,Great Post,,,,I also believe that unless someone else has solid proof for 2's going 16 weeks and straight facts,,Stick to what is working.  Hope you are feeling ok these days and if I remember right,,,you are thinking about starting tx up again end of summer???

Rifle,,,Looks like you are going to fit in just fine, as we do like to kick some Dragon Arse,,,especially when its down,,,Kick it in the ground!  The past few months,,,seems like so many are hitting the big SVR,,,,Keep coming and you will be joining us on the bandwagon!

[layla]

I was told by Pegasys and a couple docs that results of trials include everyone who started in the trial. I have also seen in study results that they do indicate poeple who stopped and or were not comliant but they were included in the test results. I beleive this is a requirement in doing studies. Surely if studies allowed companies to eliminate counting anyone who did not finish the positive result or % of SVR rates would be much higher as the drug companies would only count successes. If a person did not repond well enough they could simply eliminate then before ending tx and make there drugs success % look like they are performing better. LL

[snook_man]

Here is a direct response from my DR on your question..
  

"Generally speaking, longer is better. Most of us retreat HCV patients with genotype 2 and 3 for 12 months, because we assume that there is a higher relapse rate with the 24 week treatment. Psychologically I feel it is better to go longer and be reasonably certain of a cure than stop and have to go back on therapy for the second time certainly for a year."

AS for your other statement, your DR is incorrect. When SVR rates are registered, only those patients who COMPLETE treatment, are factored. Not everyone who initially started.We all have asked that question many, many times..

Treatment WILL get better, you just have to believe it. If it didn't, do you think people would be going so long? REv did 88 weeks, Cuteus 72..  

[Califia]

Yes, but....the original treatment lengths were educated guesstimates, and the 24/48 options had a lot to do with what the pharm companies thought insurance companies would find acceptable  and patients would tolerate.   Frankly, it heartens me that treatment lengths and treatment drugs are constantly being finessed.   ARTGAL, if you trust the intelligence of your doctor then why not take that gamble?  The worst thing you'd have to do is repeat treatment.  Your unwillingness to risk your general health and ruin your work life are perfectly understandable.   I say all this not having closely scrutizined the new research, but shorter tx for geno 2's could well be a reasonable way to go.   And why not?  After all,  extended tx for geno 1's, which all of us here advocate so strongly, is not exactly inscribed in scientific stone yet.   Treatment paradigms evolve and change, and that is a GOOD thing.

[snook_man]

Yes, but as a genotype 2, with a possible relapse would be retreatment and for the 48 week duration..
Come on, which would you feel better with? 24 weeks and pretty much a done deal, or play the odds of a new theory and possibly relapse, and have to retreat for double the original sentence?

[artgal]

What makes you think it would be retreatment for48 weeks? I asked my doctor about this and he said it would only be the 24 week period.

[layla]

I just think it is meaningfull that all studies show absolutly no differnce in SVR rates for 16 and 24 weeks. I did externded tx because a few studies, and only a very few at that time, were saying extending might improve SVR rates in G1's. So even the slightest chance would make me do the longer tx. LL

[honey1616]

Yep,,,I see what you are saying,,,,if you didn't make SVR at the 16 weeks,,then the dr says,,,go again for the full 24 weeks.  Hmmmm,,,not sure how I feel on that because if it was 16 weeks and 24 weeks,,,,same percent on clearing,,,Then why aren't all geno 2's just doing 16.  I would want to ask several drs that. Its a hard call and one only you could make.  I guess how lucky do you feel?  
Maybe even shoot an email Dr Cecils way,,,I value his opinion..

[snook_man]

Most of the geno 2's that relapse after treating for 24 weeks, go on to retreat for 48.. If 24 weeks was unable to eradicate the virus the first time, what would lead you to believe it would work the second go round?
If Geno 1's relapse, retreatment is usually pushed up to 72 weeks.

Here is a link for geno 1's, showing that as little as 24 weeks produces same SVR rates as 48.. But only in those who obtain SVR at week 4. My DR suspects me to be one of these, as my initial VL was only 4000, but I'm not jumping ship till there is long term substantial data to back it.

http://www.hivandhepatitis.com/2005icr/easl/docs/041805_f.html

[artgal]

According to my doctor the odds are the same. BUT this is only a possibility if I clear at 4 weeks -- I'll be tested next week.

[cuteus]

we have seen many 4 wk EVR s relapse after the 48 wk mark. Cindee was one of them. 100% compliant and EVR, relapsing shortly after stopping.  I would not want to be a guinea pig for this one.

[Califia]

True enough, but can we directly compare the experience of Geo 1's with that of Geno 2's?    And there's also those anomalies who clear in spite of terminated treatment.  (Derail comes immediately to mind.)   I mean,  I personally was not willing to accept the opinions of two different doctors that  I was a shoo-in for SVR and I lobbied hard to extend, as you did.  But I also wouldn't advocate that approach across the board.  We all have to make our own choices, and the data is not exactly clearcut.    But I should also add that  tx probably won't get any harder after week 12--if anything, the hardest phase is most likely over at this point.   (I know Artgal is shaking her head in disbelief.)

[layla]

The hardest phase for me was after week 12. That is because of my thyroid. Being a G1 and having to do at least 48 weeks I would have lost it anyway BUT if I had been a G2 and did shorter tx would I have then lost it? Who knows but there are many points to ponder. LL

[artgal]

Maybe I am missing something in your posts. If a geno 2 relapsed after stopping treatment at 16 weeks, if s/he were to retreat it would be for 24 weeks. The potential for the virus to be eradicated in this 24 week treatment would be because it is 8 weeks longer than the first treatment of 16 weeks. Of course, if someone relapses on the 24 week regimen, I would think they would need to extend the treatment beyond 24 weeks if they were to try again.

Also, my doctor claims the rate of svr for geno 2 is actually 90% because the 80% includes people who did not complete the treatment.

[Califia]

I stand (or sit) corrected.  I was thinking purely of drug effects, but come to think of it my anemia and thyroid problems kicked in around week 12.  Not only should I not be generalizing my own experience, but I don't seem to be recalling it very accurately.   Blessed amnesia!  :)

[ellissg]

Sounds like you've chosen a really good Doctor. He's right on about all the latest studies for Genotype 2, and the odds are the same....BUT ONLY IF YOU ARE COMPLETELY CLEAR AT 4 WEEKS. That is the critical factor. Also, follow recommended exercise, go on a Liver friendly diet, and abstain completely from alcohol.

Good Luck.........Steve

[cuteus]

the 80% odds are based on the 24 wk treatment, what are they with 16 wks?

[layla]

The main difference here is with  G2 your odds are already at 80% and with a G1 you are under 50% to start. If you had to do it over as a G2 it would not be near as bad as doing it over if you were a G1. Just some thoughts...LL

[snook_man]

All I can add to yout outlook is: Would you like to gamble with the already shakey odds? Do you want to eradicate this thing one time, or play around and possibly have to retreat?
Do the tx once, and at the recommended time period. Tx will get better, and the sx's will alleviate to some degree. There is light at the end of the tunnel, and you are going to reach it..
I'm on week 31 tonight. Studies have been presented that if a EVR and negative PCR are obtained by week 4, that even for geno 1, 34 weeks of tx is presenting the same SVR rates as 48.. I'm not gambling.. I want off the drugs, but I would rather know I gave it my all!
It WILL get better, you just have to believe it.

[artgal]

Oh my Gosh! Thank you so much for responding. I am so glad it worked for you! I am eager to see if other posts appear regarding this. I definitely don't want to fund the pharmaceutical companies any longer than necessary... Not to mention putting any more tx into my body than is needed. Thank you and I hope all your future tests are clear!

[fsplink]

Yes, I treated for 18 weeks and he said I could have stopped at 16. I just didn't have an appointment that week or you can bet I would. My husband went on to treat for the full 24 weeks but his liver wasn't in as good a shape as mine. Anyway, was clear 3 months post tx. Will be going in for my 6 month in June. My doctor said there was no difference in clearance rate for genotype 2s in 16 weeks verses 24 weeks.