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Anyone with primary myelofibrosis, low risk, asymptomatic?
Is there anyone here suffer from PMF? Or whose doctor diagnosed him primary myelofibrosis with low risk, no symptoms, my doctor is very hesitant to give me the final stamp PMF officially, and he is worrying about whether to start treatment or not?
by the way he told me the Treatment is :Jakavi ruxolitinib
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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?