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Blood Cancers & Disorders Support Group

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367 total results
Discussion
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...
Last active: Jun 16, 2024
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: Mar 19 9:27am
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: May 7 1:14pm
Discussion
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...
Last active: May 30 8:28am
Discussion
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...
Last active: 5 days ago
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: May 2 10:02pm
Discussion
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...
Last active: Apr 13, 2024
Discussion
Any information om 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...
Last active: Jun 7 8:23am
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: May 18 11:24am