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Blood Cancers & Disorders Support Group

Public Support Group
246 total results
Discussion
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....
Last active: Nov 16 2:57pm
Discussion
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...
Last active: Nov 14, 2023
Discussion
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
Last active: Jan 12 5:23pm
Discussion
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
Last active: Sep 8, 2023
Discussion
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...
Last active: Feb 7, 2023
Discussion
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...
Last active: 4 hours ago
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...
Last active: Apr 4, 2021
Discussion
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...
Last active: Sep 3 9:49am
Discussion
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...
Last active: Feb 18, 2023
Discussion
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...
Last active: Oct 7, 2019