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Re: [GIWorld-Hepatitis] Thank You All

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  • Carol
    Hi Donna I really feel for you having to make all these decisions in such a short amount of time. How bad is you liver? What did your last biopsy show? If
    Message 1 of 5 , Jan 6, 2004
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      Hi Donna

      I really feel for you having to make all these decisions in such a short amount of time. How bad is you liver? What did your last biopsy show? If you've said it before, welllll you know about brain fog....fogging up here. Until I know that, I can't make an informed opinion for you...which, remember, would only be my opinion. Hang in sweetie and get back to us ok?

      Hugggs
      Carol
      ----- Original Message -----
      From: Mscue40@...
      To: GIWorld-Hepatitis@yahoogroups.com
      Sent: Tuesday, January 06, 2004 4:35 AM
      Subject: [GIWorld-Hepatitis] Thank You All


      Hi Everyone,
      I want to thank Gene, Micky Willem, Carol and the Dr. for your quick replies,
      advise and well wishes.
      My boyfriend and son were here from Norway for Christmas so I tried not to
      think about it all much. The only ones I have told are you all.
      The Dr. treating me had thought I had beat the dragon too but ... he
      mentioned to me about getting on a clinical trial.
      The clinical trial director called yesterday about a trial doing the exact
      same treatment I had taken for 48 weeks Sherling-Plough peglated interferon
      alpha 2b and ribavirin on a weight based dose. If after 12 weeks I clear the
      virus I would continue for a year. If I didn't clear I would or would not continue
      on a low dose interferon for 3 years I believe is what she said. Since it is
      a study I guess some get the small dose and some don't.
      The Dr. will call back Wednesday after hearing from the clinical director
      about what trial study she found I was eligible for.
      I am confused and curious about my options.
      What treatment would a Dr. prescribe for me to take outside of the clinical
      trial?
      How long will my liver last without treatment?
      How would my body take treatment again?
      How could I support myself without working on treatment?
      Which is the better alternative for my family? Put my 12 year old through
      another year of me on treatment or just let it go and continue on living a
      normal life like we are now.
      Mickey you have made it..you will feel so much better once off treatment. It
      is just around the corner.
      Gene, how is your salon business going?
      Updates on everyone will be nice to hear.
      Your Friend Donna who wishes she didn't have to make any decisions right now.




      [Non-text portions of this message have been removed]



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    • Gail Samples
      Donna- I am really sorry to read of the bad news. It is a real big let-down to go through treatment and then relapse. A doctor could prescribe Roche s
      Message 2 of 5 , Jan 7, 2004
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        Donna-

        I am really sorry to read of the bad news. It is a real big let-down to go
        through treatment and then relapse. A doctor could prescribe Roche's
        pegylated interferon-which is different than Schering's plus Ribavirin.
        Also, Amgen is working on a pegylated version of Infergen-which is a real
        ass kicker-but actually, the original non-pegylated Infergen at this time is
        the only 'FDA approved' treatement for relapsers. I don't know what shape
        your liver is in, but the time on treatment will have allowed it to heal a
        bit. Your reaction to a second round of treatment will depend on what
        treatment you get, dosage, which interferon you take, etc. My belief is
        that any treatment after relapsing must be stronger than the original
        treatment or it will not work. It doesn't sound like the trial you
        mentioned here will be effective. Again, I am sorry to hear of your
        relapse. My guess would be to give yourself some time to let things sink in
        before making a decision about re-treatment.

        gail

        -----Original Message-----
        From: Mscue40@... [mailto:Mscue40@...]
        Sent: Tuesday, January 06, 2004 7:35 AM
        To: GIWorld-Hepatitis@yahoogroups.com
        Subject: [GIWorld-Hepatitis] Thank You All


        Hi Everyone,
        I want to thank Gene, Micky Willem, Carol and the Dr. for your quick
        replies,
        advise and well wishes.
        My boyfriend and son were here from Norway for Christmas so I tried not to
        think about it all much. The only ones I have told are you all.
        The Dr. treating me had thought I had beat the dragon too but ... he
        mentioned to me about getting on a clinical trial.
        The clinical trial director called yesterday about a trial doing the exact
        same treatment I had taken for 48 weeks Sherling-Plough peglated interferon
        alpha 2b and ribavirin on a weight based dose. If after 12 weeks I clear the

        virus I would continue for a year. If I didn't clear I would or would not
        continue
        on a low dose interferon for 3 years I believe is what she said. Since it is

        a study I guess some get the small dose and some don't.
        The Dr. will call back Wednesday after hearing from the clinical director
        about what trial study she found I was eligible for.
        I am confused and curious about my options.
        What treatment would a Dr. prescribe for me to take outside of the clinical
        trial?
        How long will my liver last without treatment?
        How would my body take treatment again?
        How could I support myself without working on treatment?
        Which is the better alternative for my family? Put my 12 year old through
        another year of me on treatment or just let it go and continue on living a
        normal life like we are now.
        Mickey you have made it..you will feel so much better once off treatment. It

        is just around the corner.
        Gene, how is your salon business going?
        Updates on everyone will be nice to hear.
        Your Friend Donna who wishes she didn't have to make any decisions right
        now.




        [Non-text portions of this message have been removed]



        Welcome to GIHepWorld

        Post message: GIWorld-Hepatitis@yahoogroups.com
        Subscribe: GIWorld-Hepatitis-subscribe@yahoogroups.com
        Unsubscribe: GIWorld-Hepatitis-unsubscribe@yahoogroups.com
        List owner: GIWorld-Hepatitis-owner@yahoogroups.com
        URL to this page: http://groups.yahoo.com/group/GIWorld-Hepatitis
        <http://groups.yahoo.com/group/GIWorld-Hepatitis>




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      • GWhel@aol.com
        Hi Donna, I failed Interferon twice, and then combo with Ribavirin. I m 1a and am hopeful about some of the therapies that attack the virus rather than
        Message 3 of 5 , Jan 7, 2004
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          Hi Donna,

          I failed Interferon twice, and then combo with Ribavirin. I'm 1a and am
          hopeful about some of the therapies that attack the virus rather than stimulate the
          immune system. I suppose that will be 2007 or 2008. In the meantime, I'm
          eating well, resting well, keeping the stress at a minimum, and am abstaining
          completely from alcohol.

          I'll bet the treatment has helped you some. I wouldn't be afraid of trying it
          again.

          Yes, our salon is doing well. Just finished our 15th year in the same spot.
          Are you doing manicures?

          Good to hear from you.

          Gene


          [Non-text portions of this message have been removed]
        • claudine intexas
          Hi Donna, I also am very sorry to hear of your relapse. I wanted to say that I agree with what Gail has said. I think if you retreat it should be either with a
          Message 4 of 5 , Jan 9, 2004
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            Hi Donna,
            I also am very sorry to hear of your relapse. I wanted to say
            that I agree with what Gail has said. I think if you retreat it
            should be either with a different interferon or a stronger treatment.
            However, if your fibrosis is advanced then any treatment may be of
            benefit to help stop or slow progression. Have you had a biopsy, or
            are you planning a biopsy, any time soon? Even though you relapsed
            it's possible that the treatment helped your liver anyway.
            Good luck! I know you have really tough decisions to make.

            Claudine

            --- Gail Samples <samples@...> wrote:
            > Donna-
            >
            > I am really sorry to read of the bad news. It is a real big
            > let-down to go
            > through treatment and then relapse. A doctor could prescribe
            > Roche's
            > pegylated interferon-which is different than Schering's plus
            > Ribavirin.
            > Also, Amgen is working on a pegylated version of Infergen-which is
            > a real
            > ass kicker-but actually, the original non-pegylated Infergen at
            > this time is
            > the only 'FDA approved' treatement for relapsers. I don't know
            > what shape
            > your liver is in, but the time on treatment will have allowed it to
            > heal a
            > bit. Your reaction to a second round of treatment will depend on
            > what
            > treatment you get, dosage, which interferon you take, etc. My
            > belief is
            > that any treatment after relapsing must be stronger than the
            > original
            > treatment or it will not work. It doesn't sound like the trial you
            > mentioned here will be effective. Again, I am sorry to hear of
            > your
            > relapse. My guess would be to give yourself some time to let
            > things sink in
            > before making a decision about re-treatment.
            >



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