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High platelet count: What does this mean?
Blood Cancers & Disorders | Last Active: Feb 11, 2023 | Replies (95)Comment receiving replies
Glad your BMT was successful, Lori!
Of six cousins, three of us have had blood cancers. Two had SCT when they progressed to leukemias. One is doing okay six years later. The other died because his heart couldn't take the chemo and anti rejection drugs the transplant required. But he was in a situation where without the SCT he wouldn't make it, and he still had a boy at home.
I am so glad that this option is more widely available now. Due to my age and co-morbidities, it's not something I would pursue, but it has helped many people.
It's my sense that a lot of people with ET have doctors who are mismanaging things. They are making people sick with too much chemo up front, they are not providing good symptom management (often just denying that there even are symptoms), and are offering no support.
Anyone who feels hopeless deserves a better doctor and some emotional support. It makes me sad to see people with a treatable disease feeling so down.
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My hemotologist has me on the Hydro and Anagrelide plus a low dose aspirin. I tell her I have heart palpitations with these meds and I can't walk just a short distance and I get winded. She tends to ignore that I'm having these problems. A friend told me she had breast cancer and all the doctors in that medical group had weekly sessions to figure out the best route to go. I want to ask my doctor if the doctors in her practice have these sessions but I'm scared she will get upset with me. If I leave her and find another doctor, they may not do anything more for me. When she took me off Revlimid for MDS, I felt great after about 3 weeks. After a bone marrow biopsy, she told me all of a sudden I didn't have MDS. Unfortunately, the issue with the high platelets kicked in and I'm back to feeling tired and awful. I wish she would try me on 2 low dose aspirin and take me off the other meds for awhile. I have been getting blood tests every 2 weeks for years. Thank goodness I'm on Medicare now.