HU and prefibrotic myelofibrosis

[Apple238]

Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted He finally agreed to 3x a week. I’m not happy with this doctor and am seeking a new one with more experience with my situation. BTW. A month ago switched to 2x a week. On my own. Immediately my side effects almost vanished. Platelets have risen to 470. But won’t go back to HU. There has to be a middle ground somewhere. I’m 83 and feeling fine without the HU. Generally in very good health

[Jm954 Administrator]

Hi,

This group is for people who have or are caring for someone will Chronic Lymphocytic Leukaemia (CLL) or Small Lymphocytic Lymphoma (SLL) o it's difficult for us to support you here.

However, there is a group called MPN Voice which is specifically for Myeloprolerative disorders like yours and also Leukaemia Care which caters for a wide range of Leukaemia and Myeloproliferative disorders.

There are lots of new treatments for ET and there's a different old one called Anagrelide but it does cause headaches which can be severe. There are also a range of JAK2 inhibitors for myelofibrosis which are very effective. I'm sure there will be more information about other possible treatments if you post on one of those.

Here are the links:

MPN Voice: healthunlocked.com/mpnvoice

Leukaemia Care: healthunlocked.com/leukaemi...

All the very best

Jackie

[Apple238 in reply to Jm954]

Thank you so much for taking the time to give me this information! Wishing you the best!