← Return to Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

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Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Connect, @jtcat7. Looks like you have a full deck of mutations in your hand. Over our lifetime, we can develop some genetic mutations. Some of these may lead to various blood disorders such as myeloproliferative neoplasms (MPNs) which can cause issues with our bone marrow and its ability to produce healthy blood products. Many people with MPNs have either Polycythemia Vera (too many red blood cells) or Essential thrombocythemia (too many platelets). Both of these conditions may rarely progress to MF. MF (myelofibrosis) the normally spongy bone marrow can become filled with scar tissue or fibrotic tissue and interfere with blood cell production.

You’ve asked a couple of questions regarding the speed of progression and how you can feel if you’re moving from pre to the next phase. Those are great questions for your hematologist.

I did find a good series with videos from Patient Power with information about MPNs and prefibrotic primary myelofibrosis which might help in answering your questions.
https://www.patientpower.info/video/myeloproliferative-neoplasms/treatments/what-is-prefibrotic-primary-myelofibrosis
Was your high platelet level discovered during a routine exam or were you having any symptoms that to the discovery? How are you feeling with the HU? Any side effects?

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Replies to "Welcome to Connect, @jtcat7. Looks like you have a full deck of mutations in your hand...."

Thanks for responding. I was in an ER in March as a result of a fall off my front porch which resulted in a compression fracture (L-2). The platelet count was 819 which they failed to mention. My diabetic endo got the report and figured it was a mistake so her CBC showed 1.04 million platelets. She then referred me to a hematologist at Virginia Cancer Institute.
As for side effects, when I was on 2,000 mg daily, I was REALLY fatigued, night sweats and my WBC took a nose-dive.
I'm still finding my way around. The fall from the porch and the discovery of diverticulitis all happened at the same time.
Jeez...

Hi @loribmt
That was a very good video. I think doctors have a hard time telling between Easential Thrombocytosis (ET) and prefibrotic myelofibrosis.