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RE: [GIWorld-Hepatitis] Re: When to start

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  • Gail Samples
    I wish I could help, but I know of no doctors that visit our site other than Dr Misra. I do know that pharmaceuticals will give patients (terminal patients)
    Message 1 of 1 , Jan 26, 2004
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      I wish I could help, but I know of no doctors that visit our site other than
      Dr Misra. I do know that pharmaceuticals will give patients (terminal
      patients) drugs not yet approved by the FDA. They call this 'compassionate
      use'. Maybe you could start trying the pharmaceutical companies to see if
      they have anything. Or try a 'teaching' hospital. They can be excellent
      places to go for new techniques, drugs, and open minds.

      gail


      -----Original Message-----
      From: brdietrich11 [mailto:brdietrich@...]
      Sent: Saturday, January 24, 2004 1:29 PM
      To: GIWorld-Hepatitis@yahoogroups.com
      Subject: <SPAM> [GIWorld-Hepatitis] Re: When to start



      Does anyone know of any specialists that can give me their best
      educated guess? I know that if I get rid of the Hep C, I am a
      candidate for the trial. I don't have that in writing, but I trust
      the doctors I have for the brain cancer. I trust that they are going
      to do everything they can when the time comes--I do have verbal
      assurances from the doctors and they know exactly what my situation
      is. I also have more opinions (4 nays 1 maybe) from doctors that
      treating the Hep C will not hasten the return of the cancer. One of
      the "nays" is from a very well respected institution. I also have
      opinions from this same institution that the viral loads in HCV/HIV
      patients, in which the immune system is compromised, do not fluctuate
      like you would think they would. My WBC counts have been fine over
      the last 40 weeks while on the chemo. I am not worried about quality
      of life. I am worried about living and I do think that I will
      outlive the statistics since I am young. I do not have any problems
      with dying, I consider myself a Christian and saved. My faith
      waivers, but in the end it is all one really has.

      But I will fight up to the point where I cannot type another word on
      this computer.

      Please, can anyone give me a contact to specialists that have dealt
      with cancer/chemo and HCV infection? I would think that if you
      looked at the statistics, you would find that this cross section of
      patients is out there and that a doctor or center somewhere has made
      it their livelihood.

      At the least, can someone give me the contact information for the
      doctors that visit this forum?

      I sincerly thank everyone for their input.



      --- In GIWorld-Hepatitis@yahoogroups.com, "w.m.landstra"
      <lands142@p...> wrote:
      > HI.Claudine yre priceless.All the guy needs right now is sound
      medical advice,he is a guy 36,and lots of support and encouragement
      from the group.The soul is a healer too and faith moves in mysterious
      ways.Willem.
      > ----- Original Message -----
      > From: claudine intexas
      > To: GIWorld-Hepatitis@yahoogroups.com
      > Sent: Saturday, January 24, 2004 5:40 AM
      > Subject: Re: [GIWorld-Hepatitis] Re: When to start
      >
      >
      > Alley is simply being realistic. We've been dealing with the HCV
      > issue for years now, and many of us have looked into clinical
      > studies. HCV is still considered to be an incurable disease. If
      HCV
      > disqualifies you from a clinical study then going on treatment
      will
      > probably not get you in - when you are able to 'clear' the virus
      > (have an undetectable viral load) you are only considered to be in
      > remission. If you maintain an undetectable viral load at 6 months
      > post-treatment (48 weeks of treatment) then you are considered to
      be
      > a 'sustained viral responder'. If you are still undetectable one
      year
      > after treatment ends then you are considered to have a 'durable'
      SVR.
      > You still are not considered cured, and it is still not known at
      what
      > point a person might ever be considered cured. Late relapses have
      > occurred, although rare. Tests for HCV will still show you
      positive
      > for the disease since they look for antibodies. Antibodies do not
      (at
      > least not usually) ever go away.
      >
      > As for cancer preventing you from getting into a trial for HCV I
      > think this is highly variable. I had cancer, treated with
      surgery, in
      > 1995, and I was treated in a clinical trial which did include
      > ribavirin.
      >
      >
      > --- brdietrich11 <brdietrich@a...> wrote:
      > > I know one thing. You probably do not have what your claiming
      you
      > > have. If you did, you would probably be a little more positive
      and
      > >
      > > qualify your remarks with facts. Your comment "I don't think
      > > you'll
      > > qualify for the cancer trials even if you do get rid of the
      > > hep...catch 22" sounds like an attempt to discourage. If you
      are
      > > for real, then I feel sorry for you--you have given up. If you
      are
      > >
      > > not for real, then you have no business telling me or anyone
      else
      > > in
      > > this forum what you THINK is possible and what is not. I would
      > > guess you are probably with an insurance company or someone who
      has
      > >
      > > a strong interest in seeing people like me give up and die.
      > >
      > >
      > > --- In GIWorld-Hepatitis@yahoogroups.com, "Alley"
      <alleypat@c...>
      > > wrote:
      > > > << I have what is called an anaplastic
      > > > astrocytoma grade III. If I follow the statistics, I may
      have
      > > three
      > > > to five years. My goal is to get into a clinical trial but
      > > cannot
      > > > because they found the hep C. So I am trying to get rid of
      the
      > > hep c >>
      > > >
      > > > I don't qualify for trials either. I don't think you'll
      qualify
      > > for the cancer trials even if you do get rid of the hep, cuz of
      the
      > >
      > > hep treatment. You need to double check on that.
      > > >
      > > > I don't qualify for cancer trials because of the hep and
      because
      > > of the treatment, I don't qualify for the hep c trials because
      of
      > > the cancer etc. Catch 22.
      > > >
      > > > << What kind of cancers does it promote by the way? >>
      > > >
      > > > I don't know any more than what the given literature says.
      You
      > > might want to delve further into that. There hasn't been much
      time
      > > honored study on riba and cancer unfortunately. It hasn't been
      used
      > >
      > > long enough on hep c people to accumulate data. It may be that
      it
      > > triggers cancer (we all have cancer cells in our body, they
      just
      > > aren't "on") or it may be a coincidence or both.
      > > >
      > > > If you gotta get rid of the hep to do more trials, just know
      that
      > >
      > > genotype 1's have a 50% (or less depends on who you listen to)
      > > chance of getting rid of it with peg/riba. With a terminal
      cancer,
      > >
      > > I don't think I'd worry about the riba.
      > > >
      > > > You've got some tuff choices out there. Good luck. Let us
      know
      > > what you decide.
      > > >
      > > > Alley
      > > > Grand Prairie, Tx
      > > >
      > > > [Non-text portions of this message have been removed]
      > >
      > >
      >
      >
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