Hi Lynne......I am also Rich Stone's patient at DFCI. He's so
wonderful...and you will love Ilene. So glad you decided to give it
a go!
We are all hoping for the trial soon........
Cathy
--- In [email protected], [EMAIL PROTECTED] wrote:
> Well, I am off of Gleevec once again. I went to Umass to check
out the
> lymph nodes, to find the reason that I am suffering so much and
the oncologist is
> taking me off of Gleevec. I am worried that this will affect my
status on
> the trial, but I think the doctor is steering me away from
Gleevec permanently.
> I have finally made moves toward Dana Farber, successfully this
time, and
> am hoping to get on the BMS Trial wait list. The trial is set
for April,
> hopefully, though it is not yet written in Stone. Speaking of
which, I have an
> appointment with Dr. Stone and I feel very confident that I am at
a crossroads
> here.
>
> Because of my symptoms, the doctor has ordered a brain scan, MRI,
and echo
> for the heart, although he does not think that CHF is present, and
nor does he
> feel that the edema that can be so tough on Gleevec patients is
causing my
> problems. But, from what I am reading on the list, many patients
report
> similar problems to what I have, and their doctors say it is
edema-related.
> I will be having some tests done before I go to Belize but I think
I will be
> having the marrow biopsy and cytogenetics after I come back in
March. I am
> to stay off of Gleevec for a couple of weeks , and though I look
forward to
> the break, I am a little nervous this time.
>
> I shall endeavor to have a positive attitude throughout all of
this, but I
> do worry that as time goes on, Gleevec is going to be phased out
of my
> treatment. It has proven effective thus far, but not effective
enough to put me
> into molecular remission. I have great hope that the BMS drug
will be an option
> for me and for those of us who find Gleevec intolerable over long
term. I so
> wish that I could tolerate the side effects more gracefully but
that has not
> been an option for me lately. It gave me a great sense of peace
over these
> past four years to know that it was working, and now that is
coming to an end.
> I will report to the group any information I can glean from Dana
Farber for
> those of us living in New England and interested in making the
conversion.
> It would be a welcome change to have a drug that has less side
effects and
> works more efficiently. - Lynne A.
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