week of UND + 36 approach to extended tx

[wyntre9]

I'm continuing to weaken and considering cutting TX short; instead of the 72 weeks for slow responders I'm thinking about the study (can't remember the name) that said to add 36 weeks to the date of UND (mine was week 17).

Does anyone know the name of that study and does anyone have feedback about that approach?

wyntre

[jmjm530]

There are lots of "if, and, and buts" in most of these studies, when you try to match up your stats to the study stats. Berg, for example (if memory serves me) did not use weight-based ribavirin, while Wyn is.

That said, I think what you're doing at this point is not trying to figure out the ideal number of weeks to treat, but to find a reasonable compromise between the risks of continuing on with your current side effects versus the rewards (chance of SVR) for "x" given weeks of treatment.

So many factors play into this including how much is at risk (stage of fibrosis) and what are the symptons -- and possible ramifications -- of the side effects you're now experiencing.

Still, it does make sense to get the most complete data available so any decisions will at least be  based on the best guestimates of what your chances of SVR are for a given number of weeks treating.

Frankly, I forgot most of your stats and how happy you are (or are not) with your treatment team and if you've had some outside consults. But if you haven't, you're not too far from Dr. J. and D. in NYC and Dr. A. in Boston. Visiting one or two of them might help clarify things.

--- Jim

[Proactive]

I agree there are plenty of variables..In fact I happened to glance at the Berg study and had forgotten that the 12 week pcr only had a lower limit of 600 iu/ml....(myself I was 256 @ 13 weeks-Za was even less @ 12) and end of treatment and svr pcr's had a lower limit of 50....but yet in some of the charts <50 was quoted at weeks 4 and 12 ..so it gets a bit confusing....or at least confuses me (g)

Patient Evaluation:
"All patients were evaluated as outpatients for safety,
tolerance, and efficacy. HCV-RNA level as the primary efficacy
variable was assessed at weeks 4, 12, 24, 48, and 72 (group B)
and again during the follow-up period at weeks 12 and 24. The
HCV-RNA level was quantified by PCR assay (Amplicor
Monitor HCV v. 2.0; Roche Molecular Systems; lower limit of
detection, 600 IU/mL). End-of-treatment and SVRs were assessed
by qualitative PCR assay (Amplicor HCV; Roche Molecular
Systems; lower limit of detection, 50 IU/mL). HCV
genotyping was performed by reverse hybridization (Inno
LiPA HCV; Innogenetics, Gent, Belgium)."

[wyntre9]

Thanks for the referrals, jim.

At this point, I'm not gonna change Doctors until I've got the last 3 month batch of meds tucked away, at the end of January.

I believe my gastro has done as well, if not better, than most gastros but I also now realize that perhaps if i had been seeing someone who was more of a specialist in hep-c that the riba might have been increased when i didn't reach UND at week 12.
(got it at week 17)

But who knows.  Even if that had been the case, i still would not have finished 48 week SOC until mid-November and would not know SVR results until mid-February . . . so I'm playing the hand I've got, trying to do the 72 since I'm a 1A, slow responder, and if I can't finish the 72, at least I'll have a head start on meds for the next time, if there is a next time.

On the other hand, if i do get SVR from this TX, i won't need another opinion.  Point is, it doesn't make sense for me to consult anyone else until this round is finished.  i COULD be one of the lucky ones.   XXXXX (crossing fingers)

wyn

btw - read the drusano - yup, it's an older study but it does say tack on either 32 or 36 weeks to the point of UND if before 24.

I guess the 48 concept is in another study?

[jmjm530]

Not another study, it was just a variation of Drusano, my treating doc sometimes uses. Sort of an "on the fly" adjustment, in my case because of age (59 then) and histology (stage 3). He suggested  the Drusano group was younger and less fibrotic, but I really haven't checked, nor did two other consults agree with him. They were of the mind that my RVR trumped all, and onluy recommended the standard 48 weeks. The other thing about Drusano that is confusing is their average 30.4 weeks to UND. Sounds like an awful lot of slow responders to me. Maybe the full-text version supplies some more answers.

-- Jim

[kcrandy]

whatever you decide i hope everything works out for the best.

[wyntre9]

Thanks all.

The full text does explain but I don't understand it (yet).  *LOL*  I'll let you know when I know or, better yet, maybe i should send it to you, too?  Just some light reading.

BTW - I'm in drusano country!  I'm gonna try and find him.

Thanks KC.

Elaine,

eyes are ok - haveta see a retinal specialist next Friday, just to double check retinal condition.

I'm considering stopping, elaine, coz I'm extrememly weak and dizzy; can't drive, can't do grocery shopping, can't handle common everyday tasks . . . i mean, I DO, but with tremendous effort.  Plus I'm whining coz it's friday night and I'm sick of this TX.

hugs for you and nick,

wyn