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Essential thrombocytosis with MPL mutation
Blood Cancers & Disorders | Last Active: Sep 11, 2023 | Replies (32)Comment receiving replies
Welcome @flynnconn, I'm tagging fellow members @create @granniet @heartspace as they also have experience with myeloproliferative leukemia virus oncogene (MPL)-mutated essential thrombocythemia (ET).
You may also be interested in these related discussions:
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- Myeloproliferative neoplasm Anyone else have a similar diagnoses? https://connect.mayoclinic.org/discussion/does-anyone-else-have-a-similar-diagnoses/
I can understand your concerns about the side effects of hydroxyurea. Did your doctor tell you signs to watch for to help alleviate your concerns about stroke or heart attack risks?
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No. He didn’t. But I’ve made a list of the side effects to record if I get any, how severe, when etc. The fact is I’ve already experienced some at age 83. Have had hair loss but not extreme, just don’t want any more, if possible. For a number of years have had peripheral neuropathy in my feet— started with just toes on right, now both feet. Fatigue and weakness comes and goes. I do have arthritic right knee but have avoided surgery successfully so far with periodic cortisone shots. And I’m slowed up but still mobile. And I am only in my first week of taking hydroxyurea so really don’t know anything yet. Not looking forward to bone biopsy on 12/1
Thanks for contacting me and for the additional information. Hoping I can muster through as I feel pretty good now and am optimistic despite this surprising diagnosis!