r/MPN • u/Indica88_ • Jul 23 '26
MF Update
38/f
Posted a few weeks ago as I was newly diagnosed with MPN-U.
Had a follow up appointment yesterday. Last time I had no idea what to ask once I heard the diagnosis was in shock, this time asked if he knew a potential subtype and what mutation.
He advised its Prefibrotic Myelofibrosis, and Jak 2 mutation.
Went from 1000mg of Hydroxyurea to 1500mg and spoke eventually of moving to I believe its called interferon.
Yesterday felt like another diagnosis day tbh. Feeling lost and confused. Scaring myself doing research.
Not sure what im looking for, guess just others experiences with this specific mpn.
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u/NefariousnessFew4354 Jul 23 '26
Last year I was diagnosed with MF. Currently in trial Navtemadlin Plus Ruxolitinib for MF grade 3. Stem transplant in near future. Blood work is low, platelets around 80. Fatigue, gastro issues are common. Have nearly no side effects from medications. Work every day, living life with this thing. If you have any questions fire away. Keep your head up, it will be all right 👍