ET

[jenraey]

I was diagnosed with ET four years ago; A routine lab showed extremely low Ferritin levels, however weeks later at my first appointment with my Hematologist, my iron stores were back up to par. ( I had been taking iron )

My bone marrow test results showed me negative for the jak2, then last year, I was shown to be negative for the calreticulin as well. I have been treated with Hydrea since diagnosis and do have AFib, high BP, Hypertensive heart, CHF at times, a high risk for both heart attack and stroke, therefor my Cardiologist has me on Xarelto as well. The Hydrea in the 500mg dosage has at times been ineffective for keeping my blood platelet count under 1.5 million, and raising the dose has been known to lower my white cells too much. Some times my platelets are higher with a higher dose and lower with a lower dose. My Hematologist and I laugh about it; Recently he said that my bone marrow doesn't behave like anybody else, and that I need a smarter doctor..lol, and yet, this is far from a laughing matter. Why do I have ET without the markers? Need a guinea pig? Seriously. J. Mac Donald

[Mazcd Partner MPNVoice]

Hi Jenraey, I passed your question to Prof Harrison for her advice and she has said 'About 15% of ET patients lack JAK or CALR. About 20% have problems with Hydrea just like those described. Iron deficiency can push up platelets too, was it ever investigated and are the iron levels normal now. This could impact on treatment too. There are options other than Hydrea'. So maybe you could discuss a different treatment to Hydrea to treat your ET. I hope this helps, kind regards, Maz.

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I have high white blood cells and platelets.I am awaiting jak2 results.Not sure what these test show??bit anxious and a noted with myself why I agreed to tests,not having any thing explained to me. All I know us it is a new test.