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Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia
Blood Cancers & Disorders | Last Active: Aug 13 11:37am | Replies (27)Comment receiving replies
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...
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I don't think it's uncommon for high platelets to be ignored or for an MPN to be diagnosed incidentally. An alert nurse spotted an upward trend in my high platelets after a TEE (cardiac procedure for wonky mitral valve).
But yes, compression fracture-- Jeez and ouch!
I have ET, CALR mutation, which is thought to be more likely to mutate to MF. My platelets are in 400s by alternating 500 and 1,000 mg HU per day. Wondering what your doc saw that indicated prefibrotic MF vs ET?
My dad had ET also. His platelets and other blood levels started *dropping* and the nurse said that she suspected he was moving to MF. However, he was already on hospice for end-stage COPD, and he opted to stop the blood tests. Lots of unknowns about Dad's ET because he died 15 years ago and much less was known about it.
You might add to your list of questions for your hematologist:
1. Can you reduce the HU dose as your platelets get closer to normal?
2. Do co-morbidities affect the speed of progression to MF?
3. Does age affect the speed of progression to MF?
4. Is an MPN likely to mess up or cause other morbidities? I'm 71. Platelets are great, but in the last year everything else seems to be getting worse--heart, liver, teeth, glucose, thyroid, rosacea, scoliosis--except my mordant wit and bone density. Last year's scan showed I had better than expected bone density for someone my age. So yay that.