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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@garyintlv

Thanks for your welcome Lori!

Following the first appointment with my haematologist, I had more blood tests including some for a research program run by my haematologist (he is also a research scientist).
He told me that some results would be available when we meet next in September, others (DNA tests) may take up to six months. He said we would meet every three months for the time being but I don't know how often follow up blood work will be done. I assume it partly depends on the initial test results.

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Replies to "Thanks for your welcome Lori! Following the first appointment with my haematologist, I had more blood..."
nohrt4me | @nohrt4me | Aug 3 3:38pm

That's great that your doc sees you every three months at this beginning phase. Gives you lots of time to get questions answered.

Bone marrow biopsies might be done less frequently now because the blood tests are definitive. Just 10 years ago when I was referred to the hemo, I tested neg for Jak2 mutation, but the false neg rate was high. A year later, they started doing the CALR test and, bingo!, I was a rarity within a rare disease. Why I can't I get those kinds of odds playing Lotto?

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