Re: Peg

May 30, 2000

I was told today by my dr. that his next recommend for me (after being

classified as non-resp. on combo) in six months start the

Peg/ribivirin. would like input from anyone that has tried it. He

also said Peg would be approved this Dec. but Peg/ribivirin would not

be approved until next year. He wants me to get in a study that is

six months Peg/combo and if non-resp then three and a half years of

maintenance small dose interferon. This is what you commit to in

order to get in the study.

Don't know if anyone is interested in this info. or not. I asked how

long the virus lives outside the body and he said not even a minute.

He is with U.T Southwestern Medical in Dallas and they do lots of

research. Conflicting info. on test, treatments, etc. has got me very

confused about all of it. Who do you believe, or which Dr. do you

believe is more appropriate.

Good Health to All

MD

May 30, 2000

>Hi marjorie..

I live in Indianapolis, facilitate a hep c support group here. The only doc

I know of doing studies and compiling data on Peg/ribavirin is Dr. Bruce

Bacon. he is in st. Louis, MO.

Hope that helps. You could also call your Schering representative there and

see if they can give you statistics.

Glenna G.

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May 31, 2000

Dear Marjorie,

I have a question about the study that your doctor wants to put you on.

You say that it is six months of Peg/combo and if non-response then three

and a half years of maintenance dose? What happens if you DO respond? How

long will you stay on it then? As a previous non-responder don't you need

to stay on for a longer time than 6 months? I'm a non-responder too, and my

doctor is also talking about doing a peg when it comes out. I know that if

I do respond I want to stay on for at least a year, maybe even longer. I

liked the idea of the maintenance dose for so long a period. I would like to

do something like that even if I do respond. Maybe not 3 1/2 years!! Also,

which peg is being used in this study, the Schering or Roche?

I did find the info on how long the virus can live outside the body

interesting. I had asked Dr. Misra this a while back and he said up to 12

hours, depending on the room temperature. This is a current debate going on

on another HepC list, and everyone has a different 'expert' opinion! Many

are insisting it can live for days, weeks, even months. When I sent in what

Dr. Misra said I got a testy reply back that the virus could live for 3

months, that was why it was so contagious!!!! I find that down-right

silly. Everyone in our households would probably be infected, since most of

us have had this sometimes for years without knowing it, and weren't too

careful prior to finding out we have HCV. Common sense says it can't live

very long outside the body, even IN the body the virus has a very short life

span.

Good luck with your decision.

Claudine

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May 31, 2000

Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they

are doing trials with PEG only for 3 year maintenance for nonresponders,

after that, it'll be with riba.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

May 31, 2000

Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they

are doing trials with PEG only for 3 year maintenance for nonresponders,

after that, it'll be with riba.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

May 31, 2000

Dear Marjorie,

I think for a non-responder to only stay on any treatment for 6 months

is asking for a relapse. After all, you've already shown you don't respond

to interferon well. I liked the sound of the study until you got to this

part! The other medication, could it be amantadine? I'd like to see a

study on Peg, ribavirin, and amantadine, all together.

I just read a letter today about all the genotype 2's and 3's that are

suddenly relapsing, when everyone assumed they were going to be sustained

responders, just because of their genotype. Supposedly the Mayo Clinic is

going to start treating them for a full year too. Maybe 6 months is not

long enough for anyone, and I just can't believe it would be long enough for

a previous non-responder. This is the down side to studies, there is no

flexibility, no room for individual treatment options. Good luck on making

a decision, I know it will be a tough one for you. Are you in a position

where you can wait a while?

Claudine

>From: " Marjorie Delese " <mrdelese@...>

>

>Claudine, the study on the Peg/ribivirin is six months on the combo,

>if you respond that['s it, if you do not then 3 and 1/2 yrs of low

>dose INf along with this they are testing Peg along with another drug

>(don't remember the name starts with A----dine) right now they are

>starting one with just Peg but you have to e off trmts 6 months

>before starting another study.>

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May 31, 2000