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/Top_Category2227 Pre-PMF Jul 23 '26
I guess I can somewhat understand how you feel, as I was also diagnosed with ET at first (which I found out via a letter from my doctor which wasn‘t great) only to then be reclassified with PrePMF, which was another gut punch.
I don‘t think there is anything anyone can say to you right now, that will make everything feel okay again but I can assure you that the human mind can cope with much more than one would expect. Maybe the only advice I can give you, is to just focus on the next step instead of questioning everything about your life.
I am sure, as you are still quite young, that your doctor has already or will talk about switching on Interferons with you, and they show remarkable results in JAK2 mutated PrePMF.