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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (504)Comment receiving replies
Recently diagnosed with essential thrombocythemia and primary myelofibrosis with MPL mutation.
Blood transfusions and iron infusions due to no iron in bone marrow and very low hemoglobin. Still in a whirlwind. Platelet count keeps climbing, currently 1060. Taking 81 aspirin daily. Meeting again with hematologist on Monday. Not sure what next steps will be or what to ask. Any advice?
Replies to "Recently diagnosed with essential thrombocythemia and primary myelofibrosis with MPL mutation. Blood transfusions and iron infusions..."
Feel your pain - i had the same whirlwind experience - good metaphor. 🙂
Certainly, get another opinion while reaching out to support group such as The Leukemia & Lymphoma Society, 3 International Drive, Suite 200, Rye Brook, NY, 10573 keeping notes along the way of what works or doesn't work for other people - then share with your oncologist. Be sure you share with your primary doctor as well. ALWAYS research any new drug you are prescribed to ensure it doesn't impact in a negative way what their trying to accomplish. Good luck and hang in there 🙂
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My iron is low and to not disturb my blood count that came down on there own my doctor canceled the iron infusion and put my on every other day iron pills and tested after 3 months ferritin came up slightly and other 2 numbers fell down and platelets slightly raised above normal. Odd same happened with you. I wish I could help. It’s very c