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Essential thrombocytosis

Miles' mom
Miles' mom CSN Member Posts: 57 Member
in Leukemia #1

Hi there. I am looking for anyone else who has this disease/cancer (depending on who you talk to). It is very rare. Any fellow ET'iers out there? It would be nice to compare notes… :]

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  • DadOfTwo
    DadOfTwo CSN Member Posts: 1 *
    #2

    Hello, I also have been diagnosed with Essential Thrombosytosis. I have had a high platelet count for 19 years but they didn’t diagnose me until two years ago when they finally decided to do a bone marrow test.

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  • Miles' mom
    Miles' mom CSN Member Posts: 57 Member
    #3

    do you have the JAX gene? CALR? Are you on hydroxyurea? Labs monthly (or every 3) to keep an eye on platelet count? do you see a hematologist oncologist?

    Sorry for the myriad of questions and for the late response. I should check more often 😏

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