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739471 tn?1241719468

Great news on biopsy, but now I am really confused as to what to do about treatment.

Finally liver biopsy back and time to see the Hepatologist this past Monday. I immediately asked for all test results, and even before seeing the Hepatologist got my hands on the biopsy report. Imagine my surprise to see "Grade 2, Stage 2 Metavir score A-1, F1. I about jumped out of my seat and acted like a complete fool! I had in no way expected this, and had been preparing to treat immediately since the Hepatologist had pretty much informed me he thought I had cirrhosis from a low platelet count and what he thought were spider nouvi.Not only that, the biopsy report states porphyria Cutanea tarde could not be determined from this biopsy will forward to quantivie iron determination as requested which I find interesting since I had this 19 years ago.

When going to the appointment with the Hepatologist I had resigned myself to starting treatment almost immediately, now I find I have options. According to the Hepatologist it is up to me when to treat. Now, or I can wait until the new drugs are here. Results were good but at some point I am going to have to treat. His best estimation of when drugs like Teleprivir or Boceprivir would be available would be 3-5 years. I honestly was so awestruck and unexpecting this I had no idea what I wanted to do now! He ended up sending me out of the office with a follow up in 3 months to let me think about it. He suggests that maybe I go ahead and try 4 weeks of treatment, and he says that being geno type 1a, I will know in 4 weeks if I EVR if I have a good chance or not of succeeding, and of course by 12 weeks knowing whether it is worth it or not at all, and then I could stop and wait if need be for the new PI's.

I have been trying to weigh everything here because of my home situation and of course want to give myself the best chance to SVR I can if I try. Some of the questions I have are:

Is there anyway of knowing how quickly liver disease is moving? If I waited for 3-5 years would this put me into stage 3 or even 4?? And then have to have another liver biopsy before treating?

I am 56 now, so 3-5 years from now I could possibly be 61 and would that make SVR more difficult?

I am possibly the healthiest I have ever been right now, and no other health problems, so waiting I might not be that healthy 3-5 years from now so should I treat now?

Is there any chance that Teleprivir could hit the market early? Or any chance of using it without FDA approval?

How long does it take to set up treatment should I decide to treat now, that is with insurance company approval or without insurance company approval? Hepatologist's secretary told me not to worry about this, as if I decide to treat they will work it out some how, but I would hate to be ready and then not be able to treat.

So many questions running thru my mind now, any opinions?

thanks,
LD



72 Responses
717272 tn?1277594380
Until FDA approved you can only get the protese inhibitors in a study.  Look them all up on www.clinicaltrials.gov.  

It's better to treat when you are younger but if you are still in as good of shape at 61, age should not make much difference.

It is impossible to predict the progression of the disease.  If you stop drinking or doing other things that beat up your liver, it could actually improve before treatment.

I'm not sure if it is good or not to try a short trial with standard drugs.  There are a few people who fail to respond to interferon at all and once they find that out, it's a waste of time to continue or treat them again.  I don't believe I have heard that brief courses would alter a later responce, though.  Perhaps someone else has seen some research on that.
Avatar universal
Congratulations on the good news. Personally, I'd wait because in 3-5 years you will have better options requiring less treatment time. Actually that should start in just a couple of years. Meanwhile, no harm in getting a second opinion, especially with the biopsy slides as different hepatologists are known to stage things differently. Also, talking to more than one hepatologist sometimes gives you a better perspecitve and therefore makes the decision easier one way or another. I spoke to three or four (who's counting LOL)  in the couple of years before I eventually decided to treat.

-- Jim
276730 tn?1327966546
Im stage 2 grade 2 as well. I was told I should wait as well. However I never do as Im told (LOL) and I tx'd  for 55 weeks Im a 1A.

I just figured Im healthy no other issues let me give it a shot (no pun intended)...thinking maybe I wouldnt even respond to meds...you just never know. So..I took the plunge and am 5 months post tx...we shall see.

Wish you the very best in whatever you decide.
Will be a marvelous day when the new meds arrive.
Charm
Great news on your biopsy glad to hear it.
548668 tn?1394190822
I was officially stage 2 grade 2 subject to the small samples on the biopsy - there was bridging fibrosis and the specialist said because of that, and my scan (showing portal hypertension and a slightly enlarged spleen),  that I was "more likely to be Stage 3 and possibly beyond" and got me into tx quickly.  

I would be a little concerned at how fast your liver could deteriorate and get your specialists opinion on this, with some examples, so you can make a sound decision.   If you have a specialist who is prepared to advise you to stop after 4 or 12 weeks if the SOC is not giving you good chances, then you've got a specialist who is being realistic and honest.  Many do not give their patients these options or the options to extend if they aren't responding well enough.   It may be good to investigate some of the trials also??   Best wishes on your decision.
92903 tn?1309908311
Sorry to say that a biopsy can be off by a couple stages. THe issue is the sample size, and that different areas of your liver can be in different conditions. Generally I lean to moving slow and methodically - and would not suggest you rush into anything. But I would also not bank on that stage two being certain - particularly in light of other contradicting data. .
476246 tn?1418874514
Congratulations on your results. I'm a bit confused here though:

Grade 2, Stage 2 Metavir score A-1, F1.....

Isn't A1  - grade 1  and F1 - stage 1

Please someone correct me, if I'm off here...
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