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 --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
