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Are there support groups for Myelofibrosis?

Blood Cancers & Disorders | Last Active: Jan 31 3:55pm | Replies (24)

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@loribmt
I have been diagnosed with MF in October 2025.
Having read the dreadful list of side effects of Jakafi treatment, I have decided to stay put (what you referred to as mindful watching period). I am currently waiting for a second opinion from UCSF.
What we have so far is JAK2 mutation + platelets hovering around the 1,000 mark, but no enlarged spleen. Currently only taking Aspirin and Lipitor (statin)

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Replies to "@loribmt I have been diagnosed with MF in October 2025. Having read the dreadful list of..."

Hi @gajokos There are different levels of risk categories for patients with ET (essential thrombocythemia). It’s important to know where your risk level falls so that you get the appropriate treatment. For many people, aspirin works fine for helping to prevent clotting. Other patients with a higher risk for clotting or disease progression, it can be helpful to add another med such as Jakafi or hydroxyurea.
For your peace of mind, a confirmation of your diagnosis and the most effective treatment, it’s a sound idea that you’re getting a 2nd opinion. I’m all for those myself. Never hurts to get more than one professional evaluation!
Will you let me know what you find out please?

@gajokos I was diagnosed with Myelofibrosis (MF) in June of the year. My mutation is MPL not CALR or JAK. We are in a very rare blood cancer category which makes it very important to see a specialist in MF. You are in a good spot with regards to your spleen. It’s good to get ahead while you’re feeling good on any options. Best wishes on your care.

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.