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How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Blood Cancers & Disorders | Last Active: Mar 29 8:26pm | Replies (113)
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@cowestwinds

I’ve seen many who get there numbers down in the 500’s and are ok with that. I just found out I have Jak2 any my platelets are at 521. Should I wait to see if my numbers keep going up before I start Hydrea? Thanks

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Replies to "I’ve seen many who get there numbers down in the 500’s and are ok with that...."
dancouclanel4 | @dancouclanel4 | Oct 25, 2022

If platelets have been monitored and risen over 3 to 4 months - i would see an oncologist - yes. Mine were in the 800 range before i started -

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koryw208 | @koryw208 | Oct 28, 2022

I have ET, CAL-R gene mutation but the added disadvantage of Acquired Von Willebrand Disease. My platelets were at 2,800. Severe. With aVWD I'm at risk of bleeding out if injured. After my bone marrow biopsy I bled for three days. So after 2 ER visits I finally had to have the site (which keep in mind is not large) sutured closed. Also had to have another small puncture sutured closed bc it would not stop bleeding. I am no longer allowed to take aspirin, ibuprofen, etc. Tylenol is ok. I have been taking 1500mg of Hydrea daily which dropped my platelets down under 1000 but also has dropped my wbc too low. We are readjusting my meds due to the drop in white blood cells. Two rare chronic cards but thankfully aVWD is actually acquired so I didn't pass it to my kids. If anyone hears of someone with ET and aVWD please send them my way. I'd love to know there's someone else out there. take care all

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