Are there support groups for Myelofibrosis?

Hi @gajokos ,
Thank you for sharing. I think JAK2 is the most common mutation found in MPNs. I was diagnosed with primary myelofibrosis in February 2025 after my hematologist/oncologist changed her January 2025 diagnosis from essential thrombocytosis. I have CALR1 mutation.
I am confused why you would be even considered to take Jakafi if you have no symptoms and no enlarged spleen. I also have no symptoms and no enlarged spleen. I am only taking low dose aspirin, but not as often right now since I just had slow Moh’s surgery for a melonoma lentigo (insitu) on my face and want best healing.
My new insurance referred me first for my enlarged ring finger which is no painful but has both and enlarged bone and swelling under it. They were less concerned with my diagnosis of primary myelofibrosis and do have all my records. We shall see what transpires this year.
Wishing you the best and stay positive doing what you enjoy and what makes you happy.

Hi Pearl, my Kaiser oncologist wanted me to start taking hydroxyurea right away when he saw that my WBC and platelets were so high (platelets hover around 900k/u); then after the bone marrow biopsy that confirmed the mutation diagnosis, he decided I should take Jakafi instead. I have taken neither so far. My only real symptom at this stage is a bit of depression; all this is still very new as I'm still in the early shock and awe stage of the diagnosis.

Hi @jtcat7 , may I inquire about the side effects you encountered so far from Hydro

Great question. I'm not sure because the same week I began Hydrox I fell off of my porch and broke my back. I was also diagnosed with diverticulitis the same week.... (It was a pretty tough week).
I was terribly fatigued but I don't remember any other side-effects.

@davi093. hi I was diagnosed with Myelofibrosis Jan 2024. I am now 67. Had bone marrow /stem cell transplant November 2024, donated by my daughter. I want to give all of you hope. I have @90% of energy back , all my blood levels in normal range. Yes it was hard, had several chemo treatments, also Jakafi and radiation. Take it day by day. You can survive and even thrive. My life is now the new normal. Still don’t seem to have any immune response and I must be vigilant, but life is good. And so it will be for you. I was treated at Sidney Kimmel Cancer Center ,Johns Hopkins Hospital in Baltimore, Maryland. Gail

@artistsurvivor Hi Gail! While you’re waiting for @davi0937 to reply, I just wanted to welcome you to the Connect group!
Congratulations on your successful bone marrow transplant (BMT) for myelofibrosis(MF) How special it was to have your daughter as your donor!
Thank you for sharing this positive story because it can really be impactful to so many others potentially facing a BMT for MF or other blood cancers. The first year can be a bit of an adjustment period but after that it seems stamina and energy make a nice steady gain for most of us. I’m post BMT just about 7 years for AML and at 72 feel as though nothing ever happened. I’m super active and healthy and also here to offer hope! It’s worth the effort to be able to have a 2nd chance at life.

What I learned from my BMT doctor is that, while we transplant patients do have a new immune it can take a couple of years or so to mature to an ‘adult’ status. Though it will never be as robust as our factory installed model. ☺️ However, that old model failed us anyway! So we’ll take it, right?

@loribmt Hi Lori! So nice to hear from you. I’m so happy for u that you are doing so well after 7 years. I’m not familiar with your type of illness I hope to hear from a myelofibrosis patient with positive news in similar circumstances to mine. I am following two younger patients on line. Those are the only people I know who have it. Apparently it’s pretty rare. Anyway you are so right that the older we get it’s not quite as easy. But hooray for being here to enjoy every minute of life ! Sincerely ,Gail

There are more of us out there with myelofibrosis than you realize. Even Facebook has a support group specific for MF.
I was diagnosed in 2021 with severe anemia due to iron deficiency. That diagnosis sent me straight to a heme/onc doctor. Loss of iron stores shocked me. I have been tested and am not bleeding anywhere. Anyway, received iron infusion and rebuilt my red count. Hemoglobin is now in low normal range.
Multiple genetic testing showed my only mutation is JAK2. My bone marrow study showed myelfibrosis. I was put on Ojjarra to shrink my spleen and bring down my platelets which were above the normal range.
On the positive note, at 78 I don’t feel any symptoms other than needing a nap every afternoon. Maybe due to my age. So I am living the life as I did before diagnosis without a BM transplant.

@artistsurvivor Hi Gail, There are quite a few members in Connect who have been diagnosied with Myelofibros (MF) and have shared their questions, concerns, treatments, comments, etc., in various conversations in the Blood Cancer & Conditions support group. Here is a link to the search results. Feel free to pop into any discussion!
-Search for MF + Myelofibrosis
https://connect.mayoclinic.org/search/
Another member, @carolgk) will be having a BMT soon for MF in this discussion.
-Waiting for a donor confirmation for BMT
https://connect.mayoclinic.org/discussion/waiting-for-donor-confirmation-for-bmt/
For a little more reassurance, a very good friend of mine, whom I met while we were both at Mayo for our bone marrow transplants, had her BMT for Myelofibrosis. I believe she was 68 at the time and I was 65. That was 7 years ago and we are both super healthy and active. Unfortuantly she lives several states away so we don’t get together often unless the planets align for our visits to Mayo for followups. But we communicate regularly. There is no sign of her disease returning, blood numbers are normal and the scarring in her bone marrow is nonexistent.

We’ve been given a 2nd chance of life with these transplants. I’m so happy to hear you’re also healthy and back to living life to the fullest! ☺️

@loribmt thanks so much for the info. That’s great about your friend with MF. I will check into links you have me. Have a great day