Jeanne, So sorry to hear about all your ailments bu hapy that you're strong in spirit and I'll send you a card on your 110th birthday.. You can call Novartis at 866-8845906 which is the pharmacy but they can put you in touch with anyone. Someone else may know a better contact but I thought I'd send what I have.
Dr. Druker's email is [EMAIL PROTECTED] \ Best wishes, Susan L ----- Original Message ----- From: "njeanneb" <[EMAIL PROTECTED]> To: "CMLHope" <[email protected]> Sent: Friday, August 11, 2006 4:58 PM Subject: [CMLHope] Heart stuff > > 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 -~----------~----~----~----~------~----~------~--~---
