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

[Looks4Path]

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

[jmjm530]

LOL. I understand what you say about not treating with the current drugs since you're already SVR but you never know until you try. Right?

[Marcia2202]

lol... you guys are too funny...

actually doing a little tx now and then could be quite therapeutic. I'd be getting more beauty sleep and would be safe from the swine flu

[mikesimon]

No Jim I'm not. I thought about it and despite being SVR I am still going to "watch and wait" for newer drugs. I think I have time although you never really know - do you?
Nevertheless I'm still somewhat cynical - I can't help myself.
Patient Mike  - hey that's a double entendre!

[jmjm530]

Mike: I never addressed the "cured" part. But since you brought it up, your declaration of cured at 1 month post TX is a first I've ever seen here. As a rule people are cautiously optimistic at 1 month and we have invariably shared at least a portion of their arduous journey with them. You show up having already treated calling yourself "cured4life" and declaring you're cured at 1 month post treatment and that puzzles us - as does your "expertise" on myriad issues. And then you try to direct traffic on a site you presumably just joined. All that adds up to confusing or maybe bewildering or possibly cynicism
--------
So does that mean you decided not to take "cured4Life's" advice and at least do 12 more weeks of Peg in spite of being SVR?

[Marcia2202]

don't you be looking for pegasys and the riba constellation instead now.... ;-)  

[mikesimon]

I never addressed the "cured" part. But since you brought it up, your declaration of cured at 1 month post TX is a first I've ever seen here. As a rule people are cautiously optimistic at 1 month and we have invariably shared at least a portion of their arduous journey with them. You show up having already treated calling yourself "cured4life" and declaring you're cured at 1 month post treatment and that puzzles us - as does your "expertise" on myriad issues. And then you try to direct traffic on a site you presumably just joined. All that adds up to confusing or maybe bewildering or possibly cynicism
Mike