Rob
On 8/11/06, njeanneb <[EMAIL PROTECTED]> wrote:
Hey folks,
Well, I didn't panic when I saw the news about gleevec and heart stuff.
I feel fine. Yet when I had my annual appointment on July 31st, my
oncologist suggested I get a MUGA scan, even though I have no symptoms
other than very mild edema.
The scan didn't come out so well--my LVEF was 39%. So she referred me
to a cardiologist and I saw him today. I'm having an echocardiogram on
Monday.
I'm on two heart medications now in addition to Gleevec (and
compazine).
Who knew, cancer, cateracts and cardiomyopathy all before 40. I think
this qualifies me as having all of my health crises out of the way,
right? I won't have any more until I die at 110.
First, I'd suggest everyone on Gleevec get a baseline MUGA done. I hear
tell of doctors telling patients that they have nothing to worry about.
I'm 38 and in good health. I bike, walk and bus my way around the
cities most of the time and don't get winded. And now I have
cardiomyopathy. Maybe you don't have anything to worry about--but
wouldn't it be better to know for sure?
In spite of all this, I am feeling lucky. I got an appointment with the
best cardiologist in the state of Minnesota, quite by accident. I
called the University of Minnesota but they couldn't get me in until
September, so I called Minnesota Heart Clinic. I got in with the
"doctor of the day" today and he happens to be Minnesota's top heart
doctor!
I also have other options that many on Gleevec don't. I had a bone
marrow transplant and can have another DLI if I want (I've had two).
Second, I heard that someone was creating a registry of people on
Gleevec. How can I get on this list? How do I report this new
development to Novartis and/or Dr. Druker?
Blessings,
Jeanne in Minneapolis
Dx Nov 1993
Allo-Sib BMT July 1994
Recurrence July 1995
DLI #1 November 1995
Remission until July 2001
DLI #2 October 2001 (didn't work)
Gleevec Jan 2002
Remission August 2002
Zavie's List #321
http://neworleansemail.com
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-~----------~----~----~----~------~----~------~--~---
- [CMLHope] Heart stuff njeanneb
- [CMLHope] Re: Heart stuff Susan Loewenkamp
- [CMLHope] Re: Heart stuff Rob
- [CMLHope] Re: Heart stuff anjana
