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

[portann]

I'm sorry I have to go out now but that said, I feel confident I can do the original poster some good.

I have to go look at the stars tonight with my new telescope. Hope I can see Pegasus and its adjacent constellation.

Stay well.

Best regards.

Yours, etc.,

Port

[jmjm530]

You are not doing the original poster any good at all here :(
--------------
You mean like the good you do when you turn every thread you enter into a soap box calling anyone who disagrees with you "harbingers of doom"

[portann]

Looks4Path (LD) is a Stage One.

BTW, CuredforLife, who weighed in on this thread, is almost four weeks post treatment, which she cut short despite being a G1 with high viral load. She said:


“May 02, 2009 01:29AM in the Hepatitis C Community
Thank you for your words. Several weeks - almost a month now after stopping treatment I feel great!”

"Treatment cured me."

"successfully treated for Hepatitis C this past year."

“If I had not tried I would still be infected today."


Does anyone know if RVR's are sometimes declared cured before four weeks post-tx?

[jdwithhcv]

What a relief.

[mikesimon]

Well, I guess that eliminates any doubt.
Mike

[Marcia2202]

Deb, the thing is that Look4path is 'only' Metavir stage 1 grade 1, I personally find it not risky to watch and wait for a couple of years with that little damage. The stage 2 grade to is on another scale we don't usually use here on the forum.

all:
I understand that one wants to treat now and here to get rid of the virus. I did not have the 'privilege' to be able to have a biopsy and since I wanted to treat so badly, I went right ahead with it. Being a geno 3, I did not clear at 4 weeks, meaning I had to extend treatment. Compared to a geno 1, I 'only' did 32 weeks. It was a physical hell for most of the time, but I was dang lucky not to end up with any thyroid or Diabetes or any autoimmune diseases post tx. I feel great, just that nasty little rash on the back of my neck left, which I hope will eventually go away, too.

Still, with the knowledge I have now, and if I had little damage I would definitely wait, if I knew I had to treat for at least 48 weeks. Treatment can be tough, really tough, and why would one if one had the choice to wait, deliberately want to do twice the length with less chance of SVR, instead of waiting a year or two. It is a mystery to me.