Experiences with

Myelofibrosis

John Mascarenhas focusing on the topic "How Myelofibrosis is Staged" Register for the event to join live or get the recording of this event sent directly to you! https://healthtree.org/myelofibrosis/community/events/apr205-roundtable-myelofibrosis-stages?

Would like anyone's experience of myelofibrosis please

Good afternoon, please share your experience with post-polycythemia myelofibrosis

Worrying it’s going to turn into Myelofibrosis!

I know RBCs can last about 120 days, but with myelofibrosis? Mine is post-PCR, which I have had since 2010. Lucieboo.

From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of myelofibrosis other than having regular bone marrow biopsies, which would be extremely expensive. For some people it seems the symptoms of myelofibrosis appear very suddenly.

🎉Finally out🎉 Allogeneic Stem Cell Transplant for Myelofibrosis and Myelodysplastic Syndromes: A Contemporary Review https://onlinelibrary.wiley.com/doi/10.1002/ajh.27660 Thank to Nico Gagelmann M.D.

Here an update from Hematology advisor related to you with Myelofibrosis refractory or intolerant with Rux https://www.hematologyadvisor.com/news/myelofibrosis-fedratinib-effective-second-line-therapy-risk/?

Hello everyone, it's been a while since I last posted, today I received the saddest news ever, my hematologist told me probably progression to myelofibrosis, diagnosed with ET since 2014.

My husband has recently been diagnosed with Post Essential Thrombcythaemia Jack 2 negative Myelofibrosis. He was originally diagnosed with essential thrombcythaemia Jack 2 negative in 2009 - he is now an extremely healthy (apart from this of course) 81-year-old.

https://www.macmillan.org.uk/cancer-information-and-support/blood-cancer/myelofibrosis-mf This is s helpful short guide put out by Macmillan. UK based- but England, Wales, Scotland and Northern Ireland all have different access to meds (as I found out the hard way). I

Any articles related to prognosis for primary myelofibrosis and diabetic patients? Thanks..

https://healthtree.org/myelofibrosis/community/podcasts/feb2025-podcast-mpn-ash

My husband has post-polycythemic myelofibrosis. Since 2015 he has been taking ruxolitinib. Over the past year he has lost 20 kg, he has anemia and thrombocytopenia. The doctor recommended switching to Momelotinib. Maybe someone has the same diagnosis and is taking Momelotinib?

My husband has myelofibrosis after polycythemia. He has been taking ruxolitinib for 9 years. Over the past year, he has lost 23 kg, his already huge spleen continues to grow, he has anemia, shortness of breath. The doctor recommended switching to Momelotinib.

Hi I have primary myelofibrosis- diagnosed 7 yrs ago I’ve now switched to 100 mg of momelotinib per day to see if I can maintain the useful increase in haemoglobin and energy without the dizziness that the full dose was causing. I’d tried 200mg on alternate days, but that wasn’t good.

https://apple.news/AdC7uzcV7RTO-Gmyy5sxdNw An Australian friend sent me this link: its a spot on description of what daily life is like for people with primary myelofibrosis. . I hadn’t realised that my fragile skin was part of it.

hi, hubby has had PV for 10 years, been on hydroxy but still had venesections every 5/6 weeks. In feb his counts went down, then again in May… knew something was happening but haemo said it’s fine. Then end of June he got suddenly more and more breathless and counts had fallen drastically. Hgb 80 platelets

I have primary myelofibrosis (diagnosed March 2024) and am still learning what is and what isn’t associated with it. My resting heart rate is between 43-50 bpms. Blood pressure is fine (110/68 on average) and I am not an elite athlete.

It looks very likely that husband will be starting on Momolitinib to treat his post essential thrombocythaemia myelofibrosis. He is nearly 82 and has no other issues.