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Avatar universal

New also..

Hi. I found out I have HCV about 6 months ago. I believe I've had it for about 25 years.  I started on treatment and was on it for 1 week then I freaked out because I couldn't get ahold of anyone at my doctors office. The vmail recording said I had to wait 24 to 48 hours for a call back from them. I needed to do labs in one or two days and had no idea where to go get them at ( I know now I can go just about anywhere).  So I got a second recommendation for a new doctor and went to him. He told me to stop treatment for now since I was only on it for 1 week.  He took 6 vials of blood and will check for genotype subtype, viral load and whatever else.  I have not seen a copy of the results yet.  I am level 1 on scarring and inflamation per my biopsy results.I have genotype 1 (don't know subtype) and I think my my viral load is 1,000,000. I am not looking forward to treatment (not that ANYone is).  My question is should I go ahead and start treatment now or, since my liver biopsy is at level 1/1, wait for the new drug.  I could wait until my liver level get to a 2/2 and if I haven't found any trials by then, start treatment with the current drugs that are out there. Does this sound reasonable or am I off my rocker? Does anyone know how long it will be before the new drug hits the market? I really appreciate this site and any comments. Thank you so much! Theresa
13 Responses
Avatar universal
Leery:  I could wait until my liver level get to a 2/2 and if I haven't found any trials by then, start treatment with the current drugs that are out there. Does this sound reasonable or am I off my rocker?
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No, sounds like you're solidly on your rocker, not off it, at least to me.

You will find different opinions both here and in the medical community whether genotype 1's with little or no liver damage should treat or adopt a "watch n' wait" strategy.

If it were me, I'd watch n' wait because the current treatment drugs are not without their own risks, and in general Hep C is a very slow moving disease that can be monitored via periodic biopsies, Fibroscans and blood marker tests.

My story (I was a genotype 1) -- I held off treatment until my doctors told me I was between stage 3 and 4. Treated for 54 weeks and am now cured. Had I been told prior to treatment that I was a stage 0, 1 or 2, I would not have treated. Looking back, with more knowledge about the whole treatment experience, I still would not have treated even though I am now SVR (cured).

Newer drugs in trial are now delivering better cure rates in half the time, which means half the exposure to interferon. Hopefully, even better drugs/treatments will be available down the road. Best guestimate to when the first of these trial drugs (Telaprevir) will hit the market is 2009-2011.

These are general comments and other factors could influence the decision to treat or to wait -- including (but not limited) to HIV coinfection and fatty liver -- both of which might accelerate fibrosis.

Only other suggestion is whether or not you treat, find yourself a good liver specialist (hepatologist) who can do better than a 24 or 48 hour call back. In general, hepatologists know a lot more about HCV and the newer treatment protocols, not to mention being more hooked into current trials. You can usually find them at your larger, teaching hospitals.

All the best,

-- Jim
Avatar universal
Thank you so much for your comment.  That is exactly what I needed/wanted to hear. Thanks again!
Avatar universal
You're quite welcome, and I'm sure you will get some different opinions as soon as people get back from their last minute Xmas shopping. But whatever you do, take you time deciding, because it is an important decision.

-- Jim
Avatar universal
The when and why to treat has created some debate here. Some in your situation just want to rid themselves of this virus and treat and like Jim said, some wait.

I also found out around that time I had hcv and my biopsy results on FRI revealed a 0/1 (Merry Christmas!) so I'm just monitoring and will move forward with my life  knowing I won't have to include tx in the near future.

This board is top notch for support and info keep checking it out!

I'll bet your new doc recommends not treating since you're a 1/1. 2/2 is on the fence for some, but again some will wait.

If this thread takes off just remember to try and keep it simple and do a little research on your own.

Welcome aboard and good luck!
Avatar universal
The when and why to treat has created some debate here. Some in your situation just want to rid themselves of this virus and treat and like Jim said, some wait.

I also found out around that time I had hcv and my biopsy results on FRI revealed a 0/1 (Merry Christmas!) so I'm just monitoring and will move forward with my life  knowing I won't have to include tx in the near future.

This board is top notch for support and info keep checking it out!

I'll bet your new doc recommends not treating since you're a 1/1. 2/2 is on the fence for some, but again some will wait.

If this thread takes off just remember to try and keep it simple and do a little research on your own.

Welcome aboard and good luck!
Avatar universal
The when and why to treat has created some debate here. Some in your situation just want to rid themselves of this virus and treat and like Jim said, some wait.

I also found out around that time I had hcv and my biopsy results on FRI revealed a 0/1 (Merry Christmas!) so I'm just monitoring and will move forward with my life  knowing I won't have to include tx in the near future.

This board is top notch for support and info keep checking it out!

I'll bet your new doc recommends not treating since you're a 1/1. 2/2 is on the fence for some, but again some will wait.

If this thread takes off just remember to try and keep it simple and do a little research on your own.

Welcome aboard and good luck!
Avatar universal
CJ - Thanks for the advise.  Looks like you wanted to make triple sure this got posted or maybe you just  stuttered?  ;)
Avatar universal
I agree with previous posts that this is a topic much debated. I think the decision to treat or wait comes down to personality traits. My husband took the "treat now approach" because he wanted to get it over with, typical to his personality. But he was also worried that if he relapsed (which he did) that he would be older and therefore tougher to tolerate the treatment. He was 50 when he started treatment, and it was a 41/2 year journey to SVR, so now he is 55. But it's behind him now, and he still thinks he made the right choice.

It's definately a personal choice, so be sure to consider all the ramifications of starting now, or waiting.

Good luck to you,
Debbe

Avatar universal
allan: The longer you wait for TX, the further the scarring WILL go, and the harder it will become to fight the virus.
-------------------------------------------

Hi Alan,

Nice Journal, from the little I've read, and I agree with many of your views.

However, in regard to the above statement -- first, the progression of fibrosis (scarring) can be very slow, and usually monitored quite well via biopsy, fibroscan and perhaps blood markers. But equally important, a recent study of geno 1's suggests that the amount of fibrosis is not predictive of SVR, except in cases of F4 (cirrhosis). Therefore an F3 and and F0 have about the same chance of SVR everything else being equal. F4 is a negative pre-tx predictive factor.

The related point is that even if Fibrosis was associated with SVR, amy 'edge' you might lose by waiting might be more than compensated by a higher chance of SVR with a newer drug. For example, Telaprevir already is demonstrating better SVR rates than SOC in half the time. No doubt the odds will only get better -- and the treatments shorter -- as time goes by.

All the best and happy holidays,

-- Jim
315996 tn?1429054229

Thank you.

Avatar universal
It never fails to show up, I see.  
You should not based the decision solely on biopsy results, because HCV is not a liver disease only.  If you search the extrahepatic manifestations of the virus, you will understand that it is a systemic disease.  If you are suffering neurological, cognitve, and other manifestations already, consider tx. The younger you are and the milder the damage, the better the chances for cure.  If you are already in the 50's, and start tx , time is on your side if you relapse and have to do it all over again.  It would be hard to do more than one tx in your 60's or older.  That said, if I am young, mild damage, and no extrahepatic conditions, I would wait. I am happy to say, that come my 56th birthday this wk, it will find me hep c free!
good luck
Avatar universal
Trick or treat, OPPS i mean to treat or not to treat that is the question. Like the Hatfields and McCoys, the debate go's on.

And myself i hope it always will. ( At least till we get a sure cure for all ) I think it's important because both sides make sense. Let people see the good, the bad, and the ughly.

Myself after all them weeks of treating if i had mild damage and with the (HOPE) of new meds soon i would have waited. But like was said there is other factors that you must take into account.

Whatever one does is ok by me, just do it and don't look back.

Can
Avatar universal
Too right, make a choice and don't look back!  Don't spin your wheels trying to second guess it, you'll need all your resources for this fight.

Merry Christmas to all!
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