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Medical Forum / Diseases and Disorders / Hepatitis / January 2008

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A Question for ya'all

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g - 21 Jan 2008 12:05 GMT
Hi there folk. Been awhile since I posted, but thought I'd throw a question
out and see if I could get some responses, as BCLD can't or won't answer

Background:
About early November or October, BCLD and NTWBIC call after follow-up
appointment and tell me I must stop the Peg-Interferon and the Ribavarin, as
my platelet count had fallen to 36. I was 26 weeks into the 48  scheduled,
My VL was  0(zero), down from almost 4 million.. After I raised HELL about
stopping me she asked me if I wanted to continue treatment and put my life
on the line. I responded that it was my job to take the treatment and get
well, and hers to keep me alive until then. Needless to say I was a very
unhappy, big, hairy Hepper. About two weeks later she got me an appointment
with a hematologist and he recommended that I Restart TX. My Platelets were
back up to 56 or so. He was also going to try to get me onto that new drug
that restores platelets,  (my platelets have been low since the gitgo)

THE QUESTION:
I know I got Mouthy about BCLD keeping me alive, etc., but will I have to
start over and do 48, or do some modification of the 22 weeks that were(are)
left. Enquiring minds want to know.
I await your responses with bated breath.

Glenn Shehorn AKA DrDigger
Kansas City, Mo
greyhackles - 21 Jan 2008 16:58 GMT
>Hi there folk. Been awhile since I posted, but thought I'd throw a question
>out and see if I could get some responses, as BCLD can't or won't answer
[quoted text clipped - 20 lines]
>Glenn Shehorn AKA DrDigger
>Kansas City, Mo

Howdy, Glenn!

If I understand your post correctly, you're G1, and you've been off-treatment
for a couple of months. Under those circumstances, you really do have to start
from Week 0, to have a decent chance at SVR.

There is a "new" drug that is proving to be quite effective at stimulating the
bone marrow into boosting platelet production. It is called "Eltrombopag", and
GlaxoSmithKline (aka "GSK") has successfully put the drug through multiple
Phase 3 clinical trials in the last two years.

In fact, GSK submitted their application for US FDA approval in late December
2007, using the marketing name "Promacta", and will be submitting a similar
application for European marketing in 2008, under the marketing name
"Revolade".

I have no idea how long it takes for FDA approval in such matters, but the
trial results were unambiguous, so perhaps that will speed things up.

As for your relationship with your BCLD: did it deteriorate to the point that
you might want to consider finding a new physician for the next course? It's
pretty important for patient and BCLD to trust and *respect* each other to get
through what can be a trying time. If you think you might have roasted a
bridge or two, it might be a good time to start looking for another partner...

Cheers

/greyhackles
g - 21 Jan 2008 19:03 GMT
Howdy, howdy
Well If 48 weeks is what it is, then that's what I'll do. At least when I
make the decision this time, I'll know  that I've a real chance of it
working, As far as my relationship with the BCLD goes, that's just the way
she is. It seems that stepping over the VA protocol line is hard for her to
do, but I feel comfortable that her bottom line is curing her patients and
she's already used to me and my shy and wallflower ways.
Electombopag is what the hematologist is trying to get for me. He said there
was a good chance he could get it on a "compassionate" program. If it might
help and he needs a guinea pig, I;m his guy to take the needle.
Thanks for the response.
DrDigger

----- Original Message -----
From: "greyhackles" <greyhackles@NOSPAMyahoo.com>
Newsgroups: alt.support.hepatitis-c
Sent: Monday, January 21, 2008 10:58 AM
Subject: Re: A Question for ya'all

>>Hi there folk. Been awhile since I posted, but thought I'd throw a
>>question
[quoted text clipped - 64 lines]
>
> /greyhackles
Terry - 21 Jan 2008 17:08 GMT
>Hi there folk. Been awhile since I posted, but thought I'd throw a question
>out and see if I could get some responses, as BCLD can't or won't answer
[quoted text clipped - 20 lines]
>Glenn Shehorn AKA DrDigger
>Kansas City, Mo

I hope your situation is different, but I can tell you what happened
to me so you can be aware of what can happen.  Before you panic, I
don't know of this happening to anyone else so the chances it will
happen to you are remote.

I went through almost 2 years of treatment.  I took  the INTRON A pen
in combination with REBETOL for 10 months when Pegasys was still new.
After 10 months my VL dropped but was not 0.  They put me on Pegasys
and copegasys for a year.  The Pegasys cleared the virus and I am
still clear but........

A month or so after I stopped treatment I went in for labs.  I was
feeling better that day than I can remember feeling in a long time.
When I left the lab and started home I felt something cold on my arm.
I was bleeding like a stuck pig.  We went back to the lab and cleaned
up my arm.  I was bleeding from the hole they made drawing labs.  I
cleaned up my arm and the nurse put another bandage and I went home.

The lab called back in a few hours and told me to go to the emergency
room to repeat my lab tests.  I spent the next 2 weeks in the
hospital.  They repeated my labs and confirmed that my platelet count
was 5k and the normal range is 130-400K.

After a couple of weeks of tests I was diagnosed with ITP.  I was
given some mild chemo and my platelets came back up to around 100k

One warning sigh that everything was not well turned out to be a high
amount of protein in my urine.  I was developing kidney disease.  It
turned out I had lupus induced nephritis.  The Pegasys caused me to
have drug induced lupus.  They gave me some more mild chemo once a
month for 6 months.  About 3 months after they quit the chemo my
platelets came to about 130K.  The 3 stage kidney damage is done, but
I guess I am considered "cured" of the lupus.  I still have labs done
every 6 months.

This is most likely not going to happen to you, but I mentioned my
condition so you could at least keep a watch on your protein.  My
initial blood work was showing a  protein decency in my blood before I
started taking urine 24 hour tests.
Thomas Wagner - 23 Jan 2008 16:14 GMT
>THE QUESTION:
>I know I got Mouthy about BCLD keeping me alive, etc., but will I have to
>start over and do 48, or do some modification of the 22 weeks that were(are)
>left. Enquiring minds want to know.
>I await your responses with bated breath.

Well... first of all, I'd see if you were lucky and got an SVR with the
shortened treatment. You should allow your body to recover anyway, so
waiting for 6 months sounds reasonable before restarting.

Thomas
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