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Public Support Group 246 total results
Discussions (24)
Myelofibrosis*
Anyone out there wishing to discuss above diagnosis?
What are treatments for myelofibrosis?
What are treatments for mylofibrosis! I was just diagnosed with it?
Myelofibrosis or long Covid?
I live in Florida. I have Myelofibrosis, which brings anemia, but my current lab results don’t support my symptoms (e.g., fatigued all the time). So,...
Myelofibrosis w/ JAK2 mutation
I have recently been diagnosed and want to know people's experiences. Has anyone been through a clinical trial? Taken hydroxyurea? Not done anything? Worked with...
Primary Myelofibrosis diagnosis in 40’s
I was shocked to learn my diagnosis because of my age. So many people are diagnosed with PMF in there 60’s. Is there anyone else...
Is Myelofibrosis (MF) the same as Myelodyplastic syndrome?
Is Mylofibrosis the same as mylodisplastic syndrome?
Anyone with primary myelofibrosis, low risk, asymptomatic?
Is there anyone here suffer from PMF? Or whose doctor diagnosed him primary myelofibrosis with low risk, no symptoms, my doctor is very hesitant to...
Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia
Does anyone on this site have pre-fibrotic pm or know where I can get some good information. I am still a week away from a...
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...
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...
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...
Long awaited Drug for myelofibrosis (MF) has been released
Australian-made cancer drug gets billion-dollar US FDA approval https://www.smh.com.au/national/australian-made-cancer-drug-gets-billion-dollar-us-fda-approval-20230918-p5e5gp.html
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...
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...
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...
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...
Your tips as I prepare for first phlebotomy
Feb 9, first phlebolotomy (iron is low) Polycythemia Vera and Myelofibrosis - any helpful tips. I have problem with dehydration, (as teenager, I was hospitalized...
New dx of Post ET-MF
Hi, I was diagnosis with post essential thrombocythemia myelofibrosis 5 weeks ago. I am classified as low risk, with my age of 62 being the...
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