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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Apr 15 2:24pm | Replies (476)
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@lynnevb

Hi, I am new to this support group. I am 68yo. Diagnosed with ET 20 yrs ago. I have been on HU for about 10 years. Triple negative for mutations. On aspirin for about 15 years. My platelets run 2 million if I go off HU. When I take HU they run between 500,000-900,000. I take 1500 mg HU daily. If I increase the HU my wbc and other labs go too low. It is a difficult balance. I am supposed to have rotator cuff surgery but I am really nervous because I do not want to go off the aspirin. I am afraid of clots/thrombosis/stroke. Anyone have experience or advise ?

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Replies to "Hi, I am new to this support group. I am 68yo. Diagnosed with ET 20 yrs..."
trustfaith4 | @trustfaith4 | Apr 29, 2023

I would like to know if anyone lost hair when you started taking Hydrea?

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Colleen Young, Connect Director | @colleenyoung | Apr 30, 2023

Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may be able to share their experiences in preparing for surgery, reducing clots and stroke risk, and temporarily going off aspirin.

Is your surgeon aware that you have essential thrombocythemia?

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nohrt4me | @nohrt4me | Apr 30, 2023

I am looking at surgery to repair a faulty mitral valve (heart). We are all hoping this can be done trans catheter (by snaking a repair tools thru the groin and avoiding open heart surgery). However, if open heart surgery is indicated, the cardiologists tell me that they prescribe enough heparin so that aspirin will not be needed. My oncologist seems to think that as long as I stay on the HU, my stroke risk won't be any higher than anyone else in my age cohort (65+).

My main concern is that these hot shot doctors talk to each other and take the complexities of having surgery with ET seriously.

Talk to your oncologist and alert him/her to impending surgery.

That said, I have talked to other ET patients who have had no problem with joint replacement. The only one who experienced difficulty was a woman who had declined HU therapy and got an orthopedic surgeon who refused to operate until her platelet count was in the normal range. So she broke down and took the HU, and hip surg occurred without incidence some months later.

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