No more need for a biopsy??

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Paul2 - 27 Sep 2005 21:08 GMT

Just had a visit to the G.I. Its been 5 years since my second biopsy. He
said because the last one 5 years ago showed that I have cirrhosis, that
having more biopsies wouldn't be beneficial in any way. I thought that
sounded strange, but hey, what do I know?

Also, he felt we need to consider going on the latest treatment available. I
went on the old interferon regime years ago and was taken off because it
wasn't showing any improvements and my side effects were terrible.

I'm a hemophiliac with 2 herniated disc's and sleep apnea...I don't think I
could tolerate a year of horrendous side effects. The G.I. even said to me
you look like someone who can't tolerate meds of any kind very well.
I've been put on all kinds of anti-D's and other meds but it always ends up
the same, horrendous side effects and no positive results....

He quoted me that it would cost around $20,000 cdn. dollars. I'm on a
disability pension and my wife is out of work..........Yeah, lets go for
it........ :))
I know there is a drug program I can apply for (Trillium) but I really don't
think I want to go for the treatment anyway........
51 years old, Geno-type 1, I've had the disease for over 20 years more than
likely..
They have to give me better odds than, 30% success rate while on the
treatment, and a number of relapses after....

Paul

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greyhackles - 28 Sep 2005 02:35 GMT

>Just had a visit to the G.I. Its been 5 years since my second biopsy. He
>said because the last one 5 years ago showed that I have cirrhosis, that
>having more biopsies wouldn't be beneficial in any way. I thought that
>sounded strange, but hey, what do I know?

It makes sense. F4 isn't going to get better sans *some* kind of therapy, even
it is was TCM or something similar.

>Also, he felt we need to consider going on the latest treatment available. I
>went on the old interferon regime years ago and was taken off because it
>wasn't showing any improvements and my side effects were terrible.

Every new regime is incrementally better than what went before, and the rate
of SVR using Pegylated IFN with Ribavirin is significantly (like double) the
non-Peg IFN alone of only a few years ago.

>I'm a hemophiliac with 2 herniated disc's and sleep apnea...I don't think I
>could tolerate a year of horrendous side effects. The G.I. even said to me
>you look like someone who can't tolerate meds of any kind very well.
>I've been put on all kinds of anti-D's and other meds but it always ends up
>the same, horrendous side effects and no positive results....

So, one possibility is you start the combo therapy with all hands prepared to
manage side effects if/as they arise. If it gets too hard to handle, you bail.

>He quoted me that it would cost around $20,000 cdn. dollars. I'm on a
>disability pension and my wife is out of work..........Yeah, lets go for
>it........ :))
>I know there is a drug program I can apply for (Trillium) but I really don't
>think I want to go for the treatment anyway........

Two related but substantially different questions...

You'll need to get past that ambivalence if you want a decent chance at
success, compliance being the most important factor that we can control. I
strongly advise getting your game face *totally* on going in, or don't go in
at all...

>51 years old, Geno-type 1, I've had the disease for over 20 years more than
>likely.. They have to give me better odds than, 30% success rate while on the
>treatment, and a number of relapses after....

Your percentages aside, *someone* has to be part of whatever the SVR success
margin there is. Why can't that be you?

Cheers

/greyhackles

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Paul2 - 28 Sep 2005 23:10 GMT

Thanks for responding. Anyway, in 2000 I was 2 on the 1 to 4 scale. So I'm
not sure how the Dr. knows for sure I have full blown cirrhosis. That's why
I was questioning his choice of no more biopsies.

> >Just had a visit to the G.I. Its been 5 years since my second biopsy. He
> >said because the last one 5 years ago showed that I have cirrhosis, that
[quoted text clipped - 44 lines]
>
> /greyhackles

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greyhackles - 28 Sep 2005 23:50 GMT

[top-posting in turn]
Seems to be some major confusion here, I think you're right to be concerned
that something isn't quite right.

F2 is not "cirrhosis", F2 is "non-bridging fibrosis"
F4 is "cirrhosis"
(F3 is "bridging fibrosis")

You said after your second biopsy, five years ago, your doc claimed you had
cirrhosis. But he did that with a biopsy score that only supported middling
fibrosis?

Yeah, I'd be concerned.

And I'd be looking for someone new...

/greyhackles

>Thanks for responding. Anyway, in 2000 I was 2 on the 1 to 4 scale. So I'm
>not sure how the Dr. knows for sure I have full blown cirrhosis. That's why
[quoted text clipped - 62 lines]
>>
>> /greyhackles

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