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Essential Thrombocytosis symptoms

Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (115)
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@1pearl

Hi,
I am in the USA and no bone marrow biopsy was done on me to confirm ET. I have high platelets, elevated white blood cells, negative JAK2, no elevated C-reactive protein, normal sed rate. I also have no symptoms. This is all very confusing and concerning to me. Why is there not a definitive way to diagnose?

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Replies to "Hi, I am in the USA and no bone marrow biopsy was done on me to..."
rhollis | @rhollis | Jan 19 9:58am

Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist at Massey Cancer Center.

I was initially treated at a regional cancer center where blood work confirmed a CALR mutation. The Dr assumed due to elevated platelets I had ET
and I was treated for quite some time with hydroxurea, although ultimately it did not keep my platelets down the way the Dr hoped, so he took me off of it due to side effects.

At this time I sought a second opinion at Massey, and a bone marrow biopsy was recommended. This is apparently the only way to determine whether the issue is ET, Polycythemia Vera or Myelofibrosis. They have to analyze the bone marrow.

It was determined from the bone marrow biopsy that I have MF.

Based on my experience, I would recommend that you see a specialist to confirm your diagnosis.

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1995victoria | @1995victoria | Jan 20 6:00pm

A bone marrow biopsy and aspiration should clarify diagnosis, a simple blood test isn't always enough to confirm your diagnosis.

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