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People living with ET and taking Hydrea: Anybody setting records?
Blood Cancers & Disorders | Last Active: Mar 28 11:40am | Replies (63)Comment receiving replies
Great to hear of someone doing well. Cheers. One thing I would say to consider, is how much of a dose of Hydroxyurea a person is on. Personally, my numbers have been up and down. This has resulted in pretty large ‘doses’ of Hydroxyurea. Presently 23x500mg capsules per week. So my concern has been to watch carefully for side effects..hair loss being one etc. At 82 yes I would like to keep other parts of me as healthy as possible.
(also, recently had hip replacement surgery so have been recovering from that, with Physio etc) I think that is probably the case with most of us, that the Essential Thrombocythemia is not the only thing going on. Anyway, it is a relief to have the hip looked after as it was about 2 1/2 .. 3 year wait, due to COVID keeping our hospitals too busy etc. Good luck all.
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"At 82 yes I would like to keep other parts of me as healthy as possible.
(also, recently had hip replacement surgery so have been recovering from that, with Physio etc) I think that is probably the case with most of us, that the Essential Thrombocythemia is not the only thing going on. "
Very true. I have severe scoliosis (congenital spinal curvature) that causes nerve tingles, and a bad heart valve that causes dizziness. These are also symptoms of ET. I presume the migraines w flashing lights and fatigue are ET symptoms. These are better since I started HU.
Encouraged to hear you had major surgery with ET while taking HU. A mitral valve repair is in my near future. They are talking open-heart surgery, but I am hoping to make it to 70 (I'm 68) so I can have the trans cath procedure. Quicker recovery time, which would be much easier on my back. Given that the back problem will worsen with time, I'm less about living a long time than maximizing the quality of my time.