Angela, I am one of the original STI 571 UCLA trial patients. In April, I will have been on Gleevec for nine years. After a year or so, I began to have platelet problems. In the trial, we had to hold the drug when our platelets dropped below 50,000. After that, my doctor and I had an agreement I would hold Gleevec when platelets went below 35,000. During those four years or so, I had to hold to the drug on a regular basis--around every three months or so. Then they began to level off. For the past two years I haven't had to hold Gleevec at all and my platelets stay in the high 50's or low 60's. I guess my body has adapted because the only symptom I have is longer clotting time when I hurt myself. I am also chronically anemic. I have had all the tests Trey mentioned and my iron is fine. I have been taking Procrit for several years to keep my red cells up. I am concerned about that, but my UCLA doctor says I shouldn't be. If I'm not on Procrit, my hemoglobin plunges--sometimes to the 7's. Now I am able to maintain it in the low 11's. I belong to a LLS-sponsored CML support group in Orange County, CA, and many members have the thrombocytopenia and anemia problems, but no one as extreme as I do. I just try to be careful. These things don't keep me from doing marathons to raise money for the LLS. I have just signed up for my 8th one. I train and do yoga regularly. I am just plain happy to still be here after 10 1/2 years! Good luck. Trey's advice is excellent. Virginia GarnerClaremont, CAdx August 1997Gleevec April 1999
----- Original Message ----- From: "ANGELYN ESDERS" To: [email protected] Subject: [CMLHope] Thrombocytopenia Date: Tue, 1 Jan 2008 20:59:06 -0500 (EST) Happy New Year one and all. Has anyone else suffered from thrombocytopenia, or low platelets? I am covered in petechiae and have blood blisters in my mouth, and even some impressive "bruises" that are not from any injury. Terrible fatigue also...and nosebleeds.Normal platelet range (on Canadian scale) is 140-440. By the time I decided I should go to Emergency, my platelets were at THREE! They could not believe this.I was transfused with 50 units of platelets. My red and white cells are also well below normal range.I have been absolutely well on Gleevec since Jan. 2001, and have NO IDEA what might have precipitated this sudden drastic decline in platelets. I am on NO new meds.I have lupus. It has been well controlled for the last few years. I ache in every inch of my body.Any guesses from the experts about this?Surely 2008 must get better??? Angie --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
