Hep C Chat Rooms, Owned by Drug Companies! April 9, 2003
Thanks for the reply, I thought I'd drop you another
line seeing as I'm
developing star, or is it guinea pig, status with my 5a.
I've seen all but
the pancreas doctor now and have all of the doctors opinions
about my HCV and treatment. I have great news, they
don't want fill me with chemo!
The first UCLA doctor, gastroenterologist, late 50's
mainstream guy, seemed not only concerned but positively
scared of the suicidal effects of chemo. So much
so I wonder if he'd lost several patients. He strongly
suggested I wait three to five years for a better cure
to come along.
(ps I don't have pre existing depression problems)
With my recent spinal meningitis problem I developed
blurry vision so I went to an eye doctor, same as above,
main stream, older nice regular doctor. I asked
him about vision problems related to HCV and he immediately
I was being put on Interferon. He said it can cause
hemorrhages in the eye resulting in blindness and insists
I come back each two weeks once I start. He didn't
like interferon one bit. If I get bleeding in the
eyes I would have to quit the treatment.
I also went to a UCLA hepatologist because my kidneys
are making traces of blood, this can be an HCV related
issue. This man is a younger more
enthusiastic doctor also said I should wait for a better
cure, because if my
kidneys are shaky now, the chemo might target them into
kidney failure. Yesterday I saw my UCLA liver specialist,
younger guy, enthusiastic researcher of new HCV treatments,
also has seen many side effects of chemo and as I have
minimal liver damage, despite being plagued with the daily
symptoms, he also suggested I wait. 5a is fairly
non responsive, he has never seen a 5a at UCLA it's so
uncommon. He said if I was wanting chemo badly he
wouldn't stop me, but he wasn't going to push me into
it. Hooray, I think.
So, that's all the good news, the illness isn't going
to push me into dangerous treatments and boy am I grateful
to the doctors for not trying
to scare me into doing it. It looks as though you're
going to have your first
5a type undergoing your program, and I am looking forward
to it. A question I didn't see covered in
the books; Do I need to ease up to the treatment quantities
you recommend? It seems that going from 0
to overnight supplement bombardment might get some reactions.
I had an interesting experience with a chatroom recently
on healthboards.net HCV site. Despite
being interested in chemo for myself I got banned for
asking questions about alternate treatments and for recommending
alternate information sites. I also noticed that
anyone who wrote in with side effects from chemo or with
a relapse was immediately banned and they never came back.
In fact the only conversation topic is people
doing chemo with positive results. Guess
what, it's sponsored by Pegasys. It appears
to be an open forum but it's actually a carefully managed
propaganda tool. That did more to make me
run, not walk, away from chemo than I could tell you.
Anyway thanks for listening, I'll be on your books in
a week or two.