Biopsy results are in. whait and see ??

Has a post biopsy yesterday
To set it up I have been HVC since early 80

[jmjm530]

The usual recommendation for any stage 4 is to treat right away. However, your case is different in two respects.

First, it's still a little unclear if you're a stage 4 or not. And second, your body apparently didn't react well to previous treatments.

What was the date of your last biopsy and the result? Could the difference in your last Fibrosure test be because of tx lowering your fibrosis level?

In any event, I'd pursue the biopsy results a bit. Perhaps have a different pathologist at a different hospital review the slides. Recently, I had a one stage difference with two different pathologists.

Assuming it turns out you're a stage 4, it's a very tough call because you didn't do well with interferon, and I believe the newer protease inhibitor trials are only open to treatment naive folks, which you're not.

So that seems to leave the somewhat controversial maintenance treatment, perhaps other non-inteferon trial that allows relapsers, or as your doctor suggested "watchful wating".

Depending on where you live, etc, one thing you might consider is getting involved in the Firbroscan study group. There's one in Boston, Miami and somewhere inbetween I think. They'll do a five minute x-ray of your liver and translate that into a fibrosis score. They'll also re-evaulate your biopsy slides for you. All at no charge. The Boston study is run by Dr. Afdhal from Beth Israel Deaconess Hospital/Havard University. If you can get an appointment with him, he'd be an excellent consult on this entire matter.

Lastly, I did speak to one of let's say the "top ten" heptologists in the country a few days ago regarding my own case.

One of the questions I posed is whagt is the back up plan if I relapse after treatment. He said that his current recommendation is not to re-treat. He strongly feels that he will be able to cure just about anyone within five years using newer drugs.

But keep in mind, I was a stage 2-3, not sure if he'd give that advice to stage 4, but the implication was he wasn't re-treating anyone at this point who failed treatment.

-- Jim

[GoofyDad]

Dusty, It's interesting that you had that many biopsies. What was the timeframe/interval? Thanks for posting the encouraging words on better treatments ahead. I'm in a similar place to yours with boarderline/early cirrhosis - though I'm about to start first (and hopefully only) treatment.

Jim - I don't follow this board as closely as I might. Looks like yor bx score downgraded since we last spoke? That's really good news. This whole business is so full of uncertainties.

[jmjm530]

Goof said prev: "Jim - I don't follow this board as closely as I might. Looks like yor bx score downgraded since we last spoke?"

Good memory. When I started tx I was dx as stage 3/4 which I was lead to believe is between stage 3 and 4. Turns out that stage 3/4 really means stage 3 out of 4 stages. Not an insignificant difference.

Shortly after beginning treatment I had my slides read by a second pathologist at another hospital. I was now staged a "2". Better still. :) The "tie-breaker" was a third well-respected pathologist -- at third hospital -- who staged me as a 2.5. Without going into all the details I had a lengthly talk with the second pathologist and was convinced that stage 2.5 is the most accurate description of my liver condition. The pathologist did say, however, that if pressed to pick stage 2 or 3, that I would be staged a 2 -- which is consistent with the 2nd pathologist.

Had I known all this BEFORE treating, I think I'd be swimming at the beach right now instead of lumbering around my couch. LOL. Actually, probably better I didn't know because at 2.5 I am VERY borderline for tx and might have waited too long.

-- Jim

[DustyRoad46]

the biopsys have been spaced about 5 years apart (except for the last 2  they were about 2 2/1 years) . as well as yearly follow ups with blood work.   I was first dellared as non a non b hep.   that was before they were able to test for c

[cuteus]

I would consult with a different GI and get a second opinion. stage 3 or 4 would be too risky to do the wait and see plan. It sounds like you need a dr who would be aggressive in intervening when the blood counts drop, with Neupogen and Procrit.

many folks have treated a third time and cleared the virus for good.  You need an avant garde team on your side. No one knows what might stop the trials of the new drugs and then you would have wasted precious time waiting for them.
Get a second opinion on the tx issue.