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Fatigue and Frustration with CALR ET

Blood Cancers & Disorders | Last Active: May 10 7:52pm | Replies (24)

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Profile picture for nohrt4me (Jean) @nohrt4me

@bluehorse Yes, my hemo also recommended taking hydroxyurea at night. Just curious what your platelet swings look like. In the 8 years I've been on HU, mine can run from 420 to 530, though mostly they stay around the 450 mark.

My dad also had ET, and he had wild swings that I think we're as much the fault of the meds as the ET. At that time (30 years ago) much less was known about ET, and his docs started him on heavy doses of both HU and anagrelide to get platelets down asap.

Now docs are more likely to start on a lower dose and gradually add as needed.

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Replies to "@bluehorse Yes, my hemo also recommended taking hydroxyurea at night. Just curious what your platelet swings..."

@nohrt4me My Dr is hoping to get my numbers below 400. He said, earlier, "Your body is being problematic." I will get there. It's just a longer journey than I expected.