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Pre-Fibrotic Myelofibrosis Diagnosis
Hello all, so glad I found this group! My husband has recently been diagnosed with pre-fibrotic myelofibrosis. We are still waiting for a few more test however the oncologist doesn't expect anything more (hopefully so). As it stands today, we are on a wait and see what happens plan. Is this what is done? I feel we should be more proactive and see a specialists and get on that track. Should we truly wait? If not, we are in the Houston area, does anyone have any recommendations for… read more
I'm pretty sure they have MPN specialists at MD Anderson.
Hi Stacey,
You can get the score yourself using this calculator (link below) You need to know some information about blood counts. It also has other information. My score is zero which supports the watchful waiting approach.
https://qxmd.com/calculate/calculator_315/dipss...
Hello WR- the doctor did not mention a DIPSS and until you mentioned it I had never heard of it, interesting. We will ask about that his next appointment.
I have myelofibrosis and am on a watchful waiting plan. I got a second opinion as well as a consult at Dana Farber. They all concurred with the approach. It does feel odd to have a serious illness and not doing anything. Did they assign your husband a DIPSS or DIPSS plus score for risk level?
Bone Marrow Biopsy
Has Anyone Been Diagnosed With Splenomegaly At Diagnosis But Later On Diagnosed With Hepatosplenomegaly?
Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?
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