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Trial for SCH 503403...should I go for it or hold out...

topic posted Thu, April 5, 2007 - 7:24 PM by  Denise 		Share/Save/Bookmark
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Hi all,

I'm a new tribe member. I have been co-existing quite well w/hcv for around 12-14 years...never considering treatment because I'm a 1a. Liver enzymes always normal, latest biopsy in 04 showed grade 1 stage 1-2, vl on last weeks labs had jumped from 285,000 in 04 to 2.5 million.

Anyway, life turned upside now last thursday when my doctor offered me a shot at a trial they'll be starting in a couple of weeks. Wow - I just really wasn't prepared for that one. Now I'm going back and forth about whether I should go for it ....or should I hold onto my 'virgin' naive status for a better thing in the future...

The trial will be using pegintron, rebetol and the sch stuff (they really need a shorter name for that one - lol)....but there's 5 different arms to the study - 2 of 'em going for 28 weeks w/one starting the new drug a month into the protocol, 2 arms going 48 weeks with the new drug starting a week into it...and the control group...using just the peg/rebetol for 24 weeks and if you test neg, continue on for 24 more weeks of the same...if you test positive still at 24 wks, you'd have the option of adding the new drug in the protocol for another 24 weeks.

So....what would you do if you were genotype one and at my stage w/f the hep c? Oh, and other info....I'm 52, married and have a 7 year old daughter I'm homeschooling. Dh wants me to go for it because he is worried that the hep c means a shortened life...(and I'm not so sure this is so in my case) but I worry that it will be so hard on he and my daughter....

I'll think I've made of my mind and then start backing away from it. I did go in today and took care of the pre-tests and signed consents, etc....so far it's looking very much like I AM doing it :) But I can't seem to shake the nagging doubt about being a guinea pig :)

Looking forward to meeting anyone who's still here! (I've been reading the archives and learned so much and have been so inspired by so many of the tribe here!

Thanks,
Denise
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Denise
offline Denise
New Orleans
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  • Tracey
    Tracey
    offline 29

    Re: Trial for SCH 503403...should I go for it or hold out...

    Fri, April 6, 2007 - 10:04 AM
    Hi Denise

    I can understand your mixed thoughts about this. You have little damage to your liver and the virus doesn't seem to be going for all out war.
    Treatment can be harsh or it can be breezed through. I am a geno 2 and I did 24 weeks of pegasys/ interferon and it was a struggle but doable. I cleared the virus and am now nearly two years clear. (I'm 45) I had a shock the other day when I rang the surgery for results from my pcr and they told me it was positive. They rang me yesterday to say they'd mixed me up with someone else and that I was still negative. (pity the other person though) Viral loads can be all over the place but the lower they are the better chance of success.
    Do you get any symptoms from the virus? It must seem strange thinking about doing a hefty course of treatment when you don't actually feel ill.
    It's a big decision. There is a chance you could clear the virus to rule out future liver damage. There's also the the new treatment VX-950 that's only a few years away, which is much easier and less toxic than the combination therapy. You say you had a biopsy three years ago? Have you considered having another to see how things have progressed? I know it's always better to treat when the damage is slight and also easier for the liver to regenerate the less damage there is.
    I expect teaching your Daughter at home brings up concerns about side affects of treatment and feeling well enough to cope.

    Personally, if it was me, I would want another biopsy to see if the virus was doing any damage and take it from there. Whatever you decide I wish you the best and hope my post has not given you more confusion.

    Good luck.......Tracey
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    • Denise
      Denise
      offline 1

      Re: Trial for SCH 503403...should I go for it or hold out...

      Sat, April 7, 2007 - 7:21 PM
      gosh, tracey - they told you had it again, then you didn't? Man oh man - what a roller coaster ride that must have been :( well, I'm just happy for you that you got that 2nd call!

      i think I'm just gonna go for it at this point. I keep hearing that every year you delay treatmenht, you're chances of responding go down a bit. And I also keep thinking, I just might BEAT it, and then can finally put all of this behind me. That seems like a chance worth taking - unless it doesn't work - then, of course, I'll think the whole thing was a big mistake and I was misguided - lol.

      I asked my doctor to compare the VX drug and he seemed to think they were very comparable - and that it would be a looooooog time before they found anything that worked well alone, as opposed to w/the peg/riba...

      I went in for all my pretesting a couple of days ago. I had to do the blood work uptown (in New Orleans) then i had to drive all the way out to another hospital by the airport for the xrays and ekg. because the other hospital still hasn't reopened and they don't have any of that equipment in their medical complex anymore. That's just one more 'symptom' of Katrina, unfortunately.

      Thanks for the welcome - It must be a great feeling to have a SVR now at 2 years!!! Yay YOU!

      ~denise
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      • Tracey
        Tracey
        offline 29

        Re: Trial for SCH 503403...should I go for it or hold out...

        Sun, April 8, 2007 - 3:36 AM
        It was a shock to be told it had come back because after 2 years svr and being the told I'd have more chance of winning the lottery than of it coming back...it was a real shock..

        If you go ahead and go for it I wish you all the best and if you ever want a chat I'm here.

        Warm wishes Denise
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        • Art
          Art
          offline 20

          Re: Trial for SCH 503403...should I go for it or hold out...

          Wed, April 11, 2007 - 8:09 PM
          What is SCH ....? And does your doctor think it will increase your chances of responding to treatment and by how much? last month, my doctor at California Pacific in SF thought a protease inhibator is making its way soon. That it will give us 1a, higher v loads a better chance at responding. How long do you think you have had the virus? I think I may have had it for nearly 40 years-last year I was at F0 according to the biopsy-think I got it when I was 14. My doctor thinks I might be able to go another 40 with it. Who knows? Well good luck
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          • Denise
            Denise
            offline 1

            Re: Trial for SCH 503403...should I go for it or hold out...

            Thu, April 26, 2007 - 8:25 PM
            Oh, sorry Art, for the delay in responding. The forum was so quiet when I first joined that I hadn't checked it again until tonight. The SCH 504304 (or whatever that number is!) has now been given an official name, Boceprevor....and it IS a protease inhibitor. My Dr. said that by combining it w/the interferon & rebetrol, my chances of svr go up to 60%. I think I've had hep c since around '94 or there about. I've had two biopsies...last one showed (in '04) showed stage 1/grade 1-2...vl 2.5 million.
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