Support Groups

Blood Cancers & Disorders Support Group

Lock icon Public Support Group
419 total results
Discussion
Has anyone had heart issues with myelofibrosis?
I am only 46, just diagnosed with Phase I MF. I am a non smoker with an active lifestyle and relatively healthy diet. We cook...
Last active: Jan 21 9:20am
Discussion
Ruxolitinib recently prescribed for PV moving to Myelofibrosis.
I'm looking for folks that have experience with Ruxolitinib and Acyclovir for treatment of PV that is progressing to Myelofibrosis. What can I do to...
Last active: Aug 29 8:25am
Discussion
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...
Last active: May 6 10:59am
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: Aug 26 2:02pm
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: Jul 8 11:58am
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
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