Primary Myelofibrosis

Hello @Ela, I’ve seen your questions and really feel for you trying to figure out what you’re living with. I’m really sorry to read of your worries. I’d say it’s natural to worry about all this, and I expect it’s extra stressful if you’re not sure if you can access the treatments you might need.

I hope you don’t mind me asking but have you been diagnosed with myelofibrosis? I can’t see from your posts what blood cancer you have. Perhaps you’ll find the Blood Cancer UK information about Myelofibrosis (MF) useful: What is myelofibrosis? | Blood Cancer UK

If you’ve been diagnosed with Myelofibrosis (MF), you might find the information about MPNs helpful too. I have a different Myeloproliferative neoplasms (MPN) called Polycythaemia vera (PV) which can transform into MF over time. MPNs can be lived with into normal old age if your treatment works well. Have a look to see if there is information relevant to you: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

I see you’ve asked about spleen size. With MPNs, because our bodies can overproduce blood due to the gene mutations we have, our spleens can start producing blood too, hence why they can grow larger. If I understand correctly, the cytoreductive medicines like hydroxyurea and others you’ve asked about can help reduce the amount of blood our bodies make, and this helps make our spleens smaller.

I was fortunate to attend a blood cancer conference this year and took notes relating to MPNs. Maybe you’ll find some of my notes helpful: Northern California Blood Cancer Conference - #45 by Duncan

Hope this helps! Sorry you’re going through this @Ela, but you’re really advocating well for yourself.

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