Hi Scott,

  As a patient suffering from CHF, you have the right to voice your
views in the aim to help others by your experience.  I sincerely am
sorry for the CHF and wish you a speedy recovery from the heart surgery
and hope you continue to keep well.

   While we need to take all precautions against any Gleevec
side-effects, worrying incessantly about something that by medical
accounts is rare cannot be healthy, either.  Gleevec is in the lives of
patients and caregivers long-term, sure, we need to take heed of any
new development that comes along, good or bad, but along with that we
need to take into accout what CML experts from top centers feel about
these developments so we can keep our perspective and sanity.

  I tend not to see side-effects the way you do, that more you go on
taking Gleevec, more danger of side-effects.  Medical articles and what
I have seen in Gleevec patients say quite the opposite.  Liver toxicity
occurs in 5% of Gleevec patients (higher than 0.4% for CHF) and these
patients mostly get it within 2 years of Gleevec, same with Ph negative
chromosomal abnormalities.  In fact, the doctor who created all the
furore with CHF, Dr. Force, the 10 patients who had CHF all had it
within a year of taking Gleevec.  And there are thousands of Gleevec
patients worldwide who have been on Gleevec for more than 5 years.  So,
I don't necessarily believe that more time you are on Gleevec, the more
danger of side-effects.  That is certainly not true of all
side-effects.

  Regarding doses (in mg by weight, not ml), doctors have found from
controlled human trials that 400mg is the standard dose of Gleevec,
this is the dose that controls the leukemia in most patients.  However,
some patients do not respond to this dose and their doses have to be
increased.  Doctors have to carefully weigh the risk of progression to
blast crisis if the patient is on a dose that does not contain the
leukemia and the side-effects that the higher dose may bring.  If a
Gleevec patient is otherwise healthy with no liver or cardiac issues,
obviously, the desire to halt the leukemia by a higher dose is going to
influence the physician rather than a 0.4% incidence of CHF.

  Thank you for sharing your experience, it is important as well to
have perspective for all of us and I am glad that the MDACC doctors
addressed the issue of CHF in their teleconference.

Anjana
caregiver to Roy
d/x Jan 2002
400mg Gleevec, March 2002
CCR, Sep 2002


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