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Public Support Group 603 total results
Discussions (53)
Jakofi or BMT for Myelofibrosis
Evening to fellow Mayo Connect My visit with my provider showed continued increase in spleen size. I’m in a clinical trial that has resolved my...
Myelofibrosis, Ojjaara and anemia
Anybody in this group diagnosed with Myelofibrosis taking Ojjaara and still suffering from anemia? Low red blood cells, platelets are low, hemoglobin low, white blood...
What are treatments for myelofibrosis?
What are treatments for mylofibrosis! I was just diagnosed with it?
Are there support groups for Myelofibrosis?
Diagnosed with Myelofibrosis living in California. Would like to find out about group support.
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...
Anyone have Myelofibrosis (CMS-HCC)?
Anyone else have Myelofibrosis (CMS-HCC)? Was diagnosed with it beginning of Dec 2025.Currently taking Jakafi to slow progress, of course not a cure but it...
Is Myelofibrosis (MF) the same as Myelodyplastic syndrome?
Is Mylofibrosis the same as mylodisplastic syndrome?
Anyone want to talk about Myelofibrosis?
Anyone out there wishing to discuss above diagnosis?
Anyone diagnosed with both myelofibrosis and Waldenstroms lymphoma?
I was diagnosed with myelofibrosis two years ago and started Hydrea 250 mg daily with no adverse results.Now Waldenstroms lymphoma has been added to the...
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...
Does anyone with Myelofibrosis suffer musscle spasm?
At first I thought they were just cramps or what I call charlie horses. Then I was told they were muscle spasms. They happen at...
Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?
My husband has myelofibrosis. He has low platelets and has had 72 platelet infusions since the first of February. His cancer doctor started him on...
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...
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...
Anyone out there living with primary autoimmune myelofibrosis?
I was finally diagnosed with autoimmune myelofibrosis by the Mayo Clinic, which is a truly amazing place to get diagnosis and treatment. Doctors in my...
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...
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...
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...
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,...
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