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Public Support Group 635 total results
Discussions (55)
New study: Early treatment with interferon can delay myelofibrosis
https://www.pvreporter.com/interferon-for-myelofibrosis-2025-study-challenges-watch-and-wait/
Anyone have information about late stages of primary myelofibrosis?
Does anyone have a link to information regarding late stages of PMDS?My diagnosis is primary myelofibrosis. I’m probably two years into this disease without realizing...
Primary Myelofibrosis: What is life going to be like now?
I was recently diagnosed at 76 years old. I have no symptoms at this time, however google tells me my prognosis is 3 to 5...
Primary Myelofibrosis: so unsure of everything, need answers
Hello everyone. I'm am numb from overthinking everything. I was diagnosed with PMF in2022. doctors didn't think I was gonna make it. now fast forward...
Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?
I was wondering if anyone can share their experience with Ojjaara treatment. I started having anemia, high platelets, and high white count two years ago....
Primary Myelofibrosis: Continue watch & wait? 2nd opinion?
Does anyone have PMF? I was diagnosed in July and still need to learn more about what is best for me. I'm a 67 yo...
Primary Myelofibrosis: How did you come to terms with the diagnosis?
Hello, I'm 58 and just diagnosed with MF and absolutely terrified. Just acknowledging the "c" word terrifies me. I have few symptoms except for light...
My mother diagnosed with Myelofibrosis: Episodes of abdominal pain
Hello My mother who is 87 and has some dementia was just diagnosed with Myelofibrosis. She has had episodes where she’s fine and then suddenly...
With Myelofibrosis I have good days and bad days - is this normal?
I am 82 years old and have myelofibrosis. Some days I feel okay, but on other days I am wiped out, lethargic, low energy, wobbly,...
Foot nerve pain when on anagrelide for stage 2 Myelofibrosis
Has anyone experienced severe foot nerve pain with myelofibrosis? I have post ET MF and medication has not changes since transformation to ET 5 years...
Chronic Myeloid Leukemia now Myelofibrosis: Anyone had both?
Does anyone else have both? I was diagnosed August 2025 with CML, treated with Dasatinib 100 MG BCR ABLE down to 0.02 in 6 months...
Any information on using CAR-T cell techniques to treat myelofibrosis?
I read about using CAR-T cell techniques to treat myelofibrosis. The link to the information I saw is on the Blood Cancer UK website (The...
When to start worrying about blast percentage changes?
I have myelofibrosis and my blast counts have normally been in the one to 2% . Today my blast count was 17%. Is that normal...
Massive spleen and dangerous low platelet count
Myelofibrosis. Jakafi Hydrea Enrebic not the answer. Then what is. I am looking for years allready. not using any medicine at this stage
Myeloproliferative neoplasm Anyone else have a similar diagnoses?
Bone marrow consistent with a myeloproliferative neoplasm and the differential includes essential thrombocythemia and primary myelofibrosis. MPL mutation testing is positive. No sustainable iron in...
My husband has started taking Vonjo, has anyone taken Vonjo?
My husband has myelofibrosis. Was taking Vidaza it worked for a while. His Doctor started him on Vonjo, does anyone have experience with Vonjo.
Chelation therapy
Patient with primary myelofibrosis with high ferritin levels and was recommended to start chelation therapy. Articles on deferasirox are just as scary as the problems...
Interferon-alpha impact on JAK2 allele ratio?
Anyone with Polycythemia Vera (PV) or Myelofibrosis (MF) with JAK2 verified mutation, please share with me your JAK2 allele ratios while taking Interferon-Alpha (INN). I...
Getting rid of oral thrush: What works?
My mum has had essential thrombocythamia which has now progressed to myelofibrosis. Following a period where she's been very ill she has had the most...
Chemo tablet or splenomegaly to reduce spleen enlargement?
https://connect.mayoclinic.org/discussion/chemo-tablet-or-splenomegaly-to-reduce-spleen-enlargement/
I have a very enlarged spleen from myelofibrosis. Diagnosed in early 2011, I have taken no medication, only specific supplements. Until recently, my Consultant said...
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