Anyone with primary myelofibrosis, low risk, asymptomatic?

Hi, I was diagnosed with PMF CALR + Int. 2 back in March 2021. It took many avenues to confirm that I had the right diagnosis.
After AML and CLL were ruled out through MANY labs, I had to have an ultrasound of my spleen, an abdominal MRI, as well as a bone marrow biopsy once PMF was suspected. The bone marrow biopsy showed major scaring and the ultrasound and MRI revealed a very large spleen. This is how I was diagnosed.
I was then referred to a BMT/SCT physcian in the same area. After speaking with him, I also got a second opinion through MAYO clinic of Jacksonville, Fl. At that time of diagnosis, both transplant physicians said that my current trarmenr plan was right on target with starting with an aggressive clinical trial.
Neither suggested at the time that I needed a SCT right away so my main oncologist/hematologist started me on a clinical trial which included Jakafi combined with another drug. It was a rough and rocky road but I was able to tolerate it for about 22 months. Due to many circumstances and tolerability, I discontinued the clinical trial and stayed on just Jakafi. This drug has really helped in many ways since I was very sympathetic at time of diagnosis.
I hope this was helpful!😊
Kind regards,
Rene’

@mahmoudbakry, you might also be interested in this related discussion:
- Primary Myelofibrosis: Continue watch & wait? 2nd opinion?
https://connect.mayoclinic.org/discussion/primary-myelofibrosis/
Have you considered getting a second opinion?

Hi,
I found this old post, but yes, my O/H changed my diagnosis from ET on 1/10/25 to primary Myelofibrosis on 2/10/25. I have no symptoms but high platelets and white cells. I am only taking baby aspirin daily since 3/25 and I do not feel Hydrea is good to take as lowers all cells and in 2/2/25 I had bone marrow biopsy that came back 1-2 of 3 fibrosis and the stat lab I was made to take showed I had low red cells and hemoglobin but high platelets at 844 that day. My two labs after that in 3/25 and 4/25 showed normal red cells and hemoglobin and high platelets. Why would I take Hydrea if I already taking nothing had my red cells and hemoglobin somehow be low on one lab?

Your health picture sounds exactly like mine. I’m below normal for hemoglobin and red cells. Platelets are in the upper 600 thousands. Enlarged spleen. I did not know I had a disease until my hair started falling out and I lost 40 lbs without trying. I was over weight so I was pleased. My doctor ordered a variety of common tests and found I had a 7g hemoglobin and no iron stores. That was treated and my hemoglobin improved. Externally I felt great. I was sent to a heme/ onc doctor and she put me on hydroxyurea. That did not improve my high platelets, as she thought, and it started my hemoglobin to drop again. So she took me off that and I had no treatment since I had no symptoms. She miss diagnosed the type of neoplasm I had. Since I had worked in hematology, I challenged her so she ordered a bone marrow exam. The pathologist diagnosed it as primary myelofibrosis.
After many return appointments and repeat follow-up blood tests, I asked to see the lead specialist at Mayo Clinic in MN. Doctor Teffari was great. He reassured me that I was at the low risk end of the disease.
6 months later, on a follow up appointment, I mentioned that I was experiencing spleen pain. I am currently taking Ojjarra to shrink my spleen.
Sometimes I’m in denial the I have a blood cancer when I feel so normal but I do find I’m more protective of my health. I worry mostly about my immune system. Maybe I should anyway since I’m 77yr.
Since there is no cure or way to put it in remission, it makes sense to only treat the symptoms. So far my platelets have not gone down so I’m back on aspirin.
I wish you the best.

Hi cindy e m,
Thank you so much for posting. If you do not mind sharing, how does spleen pain feel? I have no pain anywhere and feel just fine. I do have non-painful enlarged right finger proximal pharyngeal joint and right clavicular sternum joint. The big right finger joint makes it more difficult for me to write but I can, just slower than before. Maybe yoga and stretching and all the other exercise I get daily is why I have no pain.? I take and record my BP each morning per my finally found decent primary doctor to monitor my BP and it is normal. I do get White Coat Syndrome at doctor appointments where my BP has high systolic and pulse because I know I feel stressed there. My weight is the same as it has been the past 35 years at 106-108 pounds. I have high platelets and normal red cells, slightly high white cells and get labs every month which my O/H changed to two months now. I take one 81 mg aspirin daily.
How old were you when you finally learned you had Myelofibrosis and not ET?
Have a blessed day.