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Anyone have information about late stages of primary myelofibrosis?

Blood Cancers & Disorders | Last Active: Apr 13 8:22am | Replies (6)
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@cindyem

Thanks for catching that. Yes, I have primary myelofibrosis. I have an oncologist that is holding off on treatment until I have problematic symptoms. I was on a medication to bring down my platelets but it also brought back my anemia so we discontinued it.

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Replies to "Thanks for catching that. Yes, I have primary myelofibrosis. I have an oncologist that is holding..."
mahmoudbakry | @mahmoudbakry | Apr 2 10:28pm

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 ?!

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