@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)
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, @toste. I was diagnosed with prefibrotic myelofibrosis in June. JAK2, ASXL1, ZRSR2 & TET2 mutations. Started with a platelet count of 1.4 million. Now down to 490k after 2,000mg/day of Hydroxyurea then 1,000 weekdays & 500 weekends. Still trying to find a balance with the Hydroxy between platelet count & white blood cell count. Good luck!!
Cheers
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.
Connect
Connect
Like
Helpful
Hug
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.