Hey all,
Back after a four year absence. I am a 54 yr old male with genotype 1,
relapser of Peg-Intron and Riba back in 2004. My liver was stage 1-2/4
when I treated in 04 with a viral load of 331,967. My recent biosy
shows that I am now at stage 2-3/4, grade 2/4 with vl 284,903. So even
with a low and decreased VL, I have acquired more liver damage.
Here are my biopsy results: "Liver parenchyma with portal lymphocytic
aggregates, mild interface hep and mild lobular inflammation.
Trichrome stain shows portal fibrosis, fibrosis septa and focal
bridging fibrosis".
My Dr wants to treat me again but this time with Pegasys 270mcg ad
Ribavirin 1400mg for 72 weeks.
You would think that after going one round and failing, I would be on
top of all of this but the past 4 years, I put my HCV aside and tried
to live a "normal" life. I do not drink or do drugs anymore, haven't
for many years now and probably have had HCV for 30 years or so. I
recently started taking Welbutrin for depression 150mgs and I just
bumped it up to 300mgs today. Besides that, I am a healthy, out of
shape 54 yr old.
Going another round with more aggressive treatment for 72 weeks is not
very appealing to me and I will no doubt lose my job but I guess my
health is more important. Any opinions on whether I should go ahead
with this second round or wait for something better?
Rusty
TX-012 - 01 Aug 2008 22:45 GMT
> Hey all,
>
[quoted text clipped - 26 lines]
>
> Rusty
Rusty...I am so sorry that you are in this bind. And I'm not talking
out my a.s here, I'm in week 44 of 72 myself--and the thought of doing
this again is...I don't have the words, ya know?
As to your situation...
Well, yes, if you want to stay alive into a ripe old age and die of
something not liver related, yes, you do need to retreat. But when and
with what are open questions.
Some thoughts:
1) Pegasys 270mcg and Ribavirin 1400mg for 72 weeks sounds good,
though I would also add fluvastatin to whatever you take if your
doctor is okay with that--google it.
2) Is it still possible to get into trials for either teleprevir or
one of the other competing drugs? I would certainly look into that.
3) Have you talked to your doctor about the pros/cons of high-dose
Pegasys vs. Infergen ( http://www.hepatitisdoctor.com/infergen.htm )
or Pegasys+Infergen?
I am sort of under the impression that because of the similarities
between Peg-Intron and Pegasys, your first go round might be able to
tell you a lot about whether or not you are likely to respond well to
Pegasys. Looking back, did your viral load fall very slowly? How long
were you undetectable before you ended treatment, etc.
4) I am a big, big believer is taking whatever other drugs you need to
take to get through treatment. I recently added fluoxetine to the mix,
because after about week 40 the depression really started to kick in,
but the biggie for me is OxyCodone, which has helped greatly with the
pain caused by combo treatment & Neupogen...
Hang in there. This guy has a great website and often responds to
emails:
http://www.hepatitisdoctor.com/
greyhackles - 01 Aug 2008 22:58 GMT
>Hey all,
>
[quoted text clipped - 26 lines]
>
>Rusty
Hi Rusty - and welcome back to the feral cave dwellers club ;-)
It would certainly be easier to recommend waiting until Telaprevir (aka
VX-950) becomes widely available - the numbers being touted are quite
encouraging for relapsers. But with your rate of progression it probably
wouldn't be wise to wait the two more years it will likely take for Telaprevir
to gain approval.
Do you recall how well you responded to the first course of treatment? What
weeks did you receive VL checks, and what week you first went undetectable? It
would be good to know those numbers, so you can compare your progress on the
second round - especially with the switch to Pegasys.
Your doc wants to go with Pegasys at 150% of standard dosage, toss in an extra
cap of Ribavirin, and simmer for 72 weeks. While that sounds like a plan, I'd
have a discussion with him about tracking your response tighter than what
(still) seems to be the norm, starting with a VL check at the end of week 4.
You might also ask your doc what he/she thinks about adding Amantadine to the
combo drugs. 100mg taken twice a day appears to have significant results with
minimal side effects (there is enough study data to substantiate this). A few
folks here added Amantadine to their second round of treatment.
Good luck, Rusty. We'll be cheering for your success!
/greyhackles
TX-012 - 02 Aug 2008 20:43 GMT
Rusty--check this out:
http://investors.vrtx.com/releasedetail.cfm?ReleaseID=325650
Phase 3 Development in Patients Who Failed to Achieve SVR with Prior
Treatment
-- Vertex and Tibotec are initiating in Europe Phase 3 clinical
development of telaprevir in patients who failed to achieve SVR with
prior treatment of pegylated interferon (peg-IFN) and ribavirin (RBV).
This study is focused on 48-week telaprevir-based regimens and is
expected to enroll approximately 650 patients. The companies are
engaged in discussions with the U.S. FDA to transition to Phase 3
clinical development of telaprevir in patients who failed to achieve
SVR with prior treatment of peg-IFN and RBV and plan to begin patient
screening in the U.S. in the third quarter of 2008.
john - 03 Aug 2008 13:27 GMT
> Hey all,
>
[quoted text clipped - 26 lines]
>
> Rusty
Hi Rusty,
I am not a doctor or really know the status of your liver but i did 3
treatments the last being 72 weeks of night infergen with pegasys
mixed in during the last month.
I was lucky that i didnt need procrit,ephogen or anything except
lunesta and lexapro.I feel that if i could do it anyone can,but as we
all know it sucks and makes life a living hell............john