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Blood Cancers & Disorders | Last Active: Feb 9, 2023 | Replies (63)

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@eileen11108

Were you originally diagnosed by extensive labs and a bone marrow biopsy? Are you seeing an MPN specialist?

I just started my journey in June 2022 after platelets rose slowly over several years. When I first saw the hematologist my platelets jumped from 621 to 735. She immediately ordered extensive labs and did a bone marrow biopsy. My diagnosis is ET JAK2.

I started on 500 mg Hydroxyurea every day but had headache issues. I am currently on Hydroxyurea 500 mg every other day and hope to be able to continue that dosage if platelet count is okay, My next labs are the beginning of January.

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Replies to "Were you originally diagnosed by extensive labs and a bone marrow biopsy? Are you seeing an..."

kto1452 | @kto1452 | Dec 11, 2022

Hi, Karen here.

I was diagnosed about a month ago with Essential Thrombocytosemia, the rate type. . My platelets were 700,000 and were gummy and dangerous for clots.
I have a JAK 2 and TET2 mutations.
I had Myeloid Panel done.

Any advice for me on how to manage? This is new to me and I have only told a handful of friends and family.

I am having my first follow up Dec 21 with my oncologist.

Do you worry about getting an infection or getting the flu from Someone. I cannot take a flu vaccine, they say.

Thank you for your information and I appreciate your time.

Karen

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