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Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?
Blood Cancers & Disorders | Last Active: Nov 1 7:29pm | Replies (36)Comment receiving replies
Good morning
Diagnosed in June 2025 with Myelofibrosis. WBC and platelets normal. Hemoglobin between 8 and 9. I’m 65. High risk due to mutation SRSF2 along with MPL. Over 20% chance of this turning into AML. I am seeing 2 md at Mayo a BMT specialist and a Clinical trial specialist. BMT MD says best to wait on BMT until a second mutation or other s symptoms. I have no co- morbidities and am in very good health otherwise. I started a clinical trial last week for low hemoglobin. I go to Mayo weekly to see if shot given increases hemoglobin and if successful could be a monthly shot for x years. It’s unnerving to wait on BMT but I understand that the risks with BMT are high and my quality of life right now is ok. Let me know if you have questions or information needs. I will say the mutation you have really impacts the course of the disease
Replies to "Good morning Diagnosed in June 2025 with Myelofibrosis. WBC and platelets normal. Hemoglobin between 8 and..."
I, like you, have low hemoglobin counts (8.1) that cause fatigue and low energy. You did not say what medicine is in the shot? Please post results ... if positive, I want to discuss with my Dr.
Thank you in advance
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@davi0937
I am so glad to hear you are doing pretty well. I thought you posted that you have CALR mutation but I think I am wrong as you just posted MPL so my mistake. I have CALR 1 , TET2, and DMNT3A. I have normal red cells, normal hemoglobin, slightly high white cells at 13, and High platelets that fluctuate but are always high this past year. I am taking low dose aspirin only. I am not interested in Hydrea which I was offered. My spleen is normal on CT scan of pelvis and bone marrow specialist also told me they do not rush to do them and I do not need one for at least five years and maybe never. I am 66 now.
I hope you get your hemoglobin level normalized from doing the trial you are on. I think you are definitely right that the mutations affect the disease a lot and I was told also that more mutations can be acquired with passing time.
Have a blessed weekend!