← Return to Anyone have information about late stages of primary myelofibrosis?

Comment receiving replies

Hello ,I wish you a speedy recovery ,my doctor told me that I have PMF but not sure 100% but he is so hesitant and he is doing his best to find something to officially diagnose me as PMF .
I think we have a connection , because my doctor is also holding off on treatment "Jakavi ruxolitinib" because he told me its (low risk asymptomatic).
Since I have been following up with the doctor for the past two years, my hemoglobin has never dropped below 16, and my platelets have never dropped or risen above normal 250, and my white blood cells at their normal rate of 9 have not changed, with mild to moderate enlargement.
And my bone marrow biopsy reticulin stain grade 1_2/4 normal to mild increase.
With negative mpl,calr,jak2 mutations .
So is it your case some way close to my case ?!

Jump to this post

Replies to "Hello ,I wish you a speedy recovery ,my doctor told me that I have PMF but..."

I was originally miss diagnosed with polycythemia Vera. Because I was borderline anemic and I worked in hematology, I challenged my doctor. Yes, I had a JAK2 deletion. So a bone marrow smear studied by a Pathologist revealed Primary Myelofibrosis. Many genetic tests done on that BM sample helped classify me as low risk.
Because I have very mild symptoms (itching, abdominal pains) my doctor is not treating yet. I had been on hydroxyurea for two months to bring down my platelets, but it dropped my red cells also into the anemic range. So, at this point, I will do six month follow ups and blood testing.
Don’t be afraid to be your own advocate. Arm yourself with questions for your doctor. Some of the cancer sites have a list that you can choose from.
I wish you well.