Experiences with

Myelofibrosis

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/?

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

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

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.

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).

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.

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

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.

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

"The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing treatments (Rux etc) for myelofibrosis cannot."

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’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting.

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.

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?

A CCHR was reached by 69% overall, independently of any degree of MR achieved; conversely, a DMR correlated with longer duration of CCHR and, most importantly, with reduced rate of progression to myelofibrosis and with longer myelofibrosis-free, event-free and progression-free survival.

I have myelofibrosis and take Jakavi 15 mg 2 times a day. I will have an open surgery for an inguinal hernia with anesthesia with novocaine (procaine) very soon.

Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She