Experiences with

Myelofibrosis

Would like anyone's experience of myelofibrosis please

I know RBCs can last about 120 days, but with myelofibrosis? Mine is post-PCR, which I have had since 2010. Lucieboo.

Here an update from Hematology advisor related to you with Myelofibrosis refractory or intolerant with Rux https://www.hematologyadvisor.com/news/myelofibrosis-fedratinib-effective-second-line-therapy-risk/?

From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of myelofibrosis other than having regular bone marrow biopsies, which would be extremely expensive. For some people it seems the symptoms of myelofibrosis appear very suddenly.

Any articles related to prognosis for primary myelofibrosis and diabetic patients? Thanks..

My husband has post-polycythemic myelofibrosis. Since 2015 he has been taking ruxolitinib. Over the past year he has lost 20 kg, he has anemia and thrombocytopenia. The doctor recommended switching to Momelotinib. Maybe someone has the same diagnosis and is taking Momelotinib?

My husband has myelofibrosis after polycythemia. He has been taking ruxolitinib for 9 years. Over the past year, he has lost 23 kg, his already huge spleen continues to grow, he has anemia, shortness of breath. The doctor recommended switching to Momelotinib.

Hello I was wondering if anyone’s ET had progressed to myelofibrosis, what were the symptoms and was it diagnosed with a BMB? Thankyou

Hello lovely people A recent Bone Marrow has shown what I believe to be early stage Myelofibrosis. Next appt in two weeks. Has anyone got any advice on any questions I should be asking re treatment etc. I have had ET Calr for 17 years. Not quite sure what to think or feel just now.

durable molecular response (DMR) complete clinical and hematological response (CCHR) [i]"Increased DMR was correlated with longer duration of CCHR, reduced progression to myelofibrosis, and increased rates of myelofibrosis-free, event-free, and progression-free survival.

durable molecular response (DMR) complete clinical and hematological response (CCHR) [i]"Increased DMR was correlated with longer duration of CCHR, reduced progression to myelofibrosis, and increased rates of myelofibrosis-free, event-free, and progression-free survival.

She gave us an information pamphlet to read, which we found very useful, but having read through a few posts on this site, I am seeing references to stage 2 and stage3 myelofibrosis.

hi, hubby has had PV for 10 years, been on hydroxy but still had venesections every 5/6 weeks. In feb his counts went down, then again in May… knew something was happening but haemo said it’s fine. Then end of June he got suddenly more and more breathless and counts had fallen drastically. Hgb 80 platelets

I see some stories about people who have taken it after HU who have developed myelofibrosis, but have never heard of developing leukemia. (I don't want myelofibrosis either). Does anyone have thoughts about this? I am asking because I am taking HU.

I have been taking Jakavi for three years after diagnosis of post-PV myelofibrosis. I get very breathless and can't walk far, but seem to cope reasonably with other activities given my age (coming up 82).

Before my sct I had significant fibrosis of my bone marrow. I have recently had a bone density scan which is in the osteopenia levels but I am 71. I don't really know what happens to the fibrosis after the sct. Has anyone with MF had fractures etc that doctors say may have been exacerbated by the mpn

I have post pv Myelofibrosis. I had a lacuna stroke 2.5 years ago before pv was discovered. My hand is constricting more and I am thinking of having some electrical stimulation to help (done by professional). I only have hand issues and mild wrist weakness.

If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://thebloodline.org/TBL/165e165/ Cheers

https://www.patientpower.info/myeloproliferative-neoplasms/is-transplant-eligibility-changing-for-myelofibrosis?ap=nl2160&rhid=62d861799e49439ac60c4157&mui=&lid=6549040

I Have Post Essential Thrombocythemia Cal-R Positive Myelofibrosis. I have been on Ruxolitinib since 2016, but have now become resistant. I am due to start Momelotinib shortly. I know it is pretty new, does anyone have a similar experience? Any tips?