Dear Susan,

  Congratulations for testing PCRU again!  If you are still having
severe side-effects and as the PK level test shows you have high
levels of Gleevec in the blood, you and hubby can discuss going to
200mg with stringent monitoring like a PCR test every month, maybe, to
see whether you remain okay?  PK level tests are for patients like you
and Barb Stanley, you are doing so well with the CML but you both have
severe side-effects.  If this test shows for a fact that the levels of
Gleevec in your blood are high and Dr. Druker has given the okay to go
to 200mg to reduce side-effects, you should be able to do so but I
would ask for extra monitoring since as you say, you are on
unchartered waters.  Please do update us on what you decide to do.
Barb is waiting for her PK level test results and I know she will be
listening carefully to your pioneering experience as are we all.

Susan, I would reduce the dose only if you are still having bad side-
effects and only you can tell us that.  I can understand your
husband's concern but the scientific test does prove that you have
higher than normal PK levels and to be safe, you can ask for monthly
PCR monitoring.  Discuss with your husband all the pros and cons.  If
your PCR goes up, you can always go back to the original dosing.

Love,
Anjana

On Feb 17, 11:13 pm, "educatorsusan" <[EMAIL PROTECTED]> wrote:
> Well, I have successfully made it to almost 4 years (began Gleevec on
> April 10th but was Diagnosed on January 8, 2003)
>
> My PCR test came back negative AND when that happens the most
> sensitive test called the "nested" test must be performed.  I am happy
> to announce to the WORLD at large that my "nested" test came back
> NEGATIVE, again!  YEAH!!!!!!
>
> So, now the big decision comes and would appreciate any comments!
>
> I am on 300 one day and 200 the other, alternating days.  That makes
> an average of 250 mg.  Since my hemoglobin and hematocrit seems to
> still be affected somewhat, it seems that my husband does not want me
> to reduce the Gleevec to 200mg.  I have constant PK testing on the
> Gleevec levels.  I am still high in that range.  Dr. Druker has given
> the okay for me to reduce my dosage to 200 mg everyday.
>
> So, since I am in unchartered waters, can anyone help me decide what
> to do...or help my husband decide what to do???
>
> Hugs,
> Susan Rosenthal
> Miami, Florida


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