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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 20 hours ago | Replies (104)Comment receiving replies
I have been on hydroxyurea for approximately two years because of a ET. When I started my doctor prescribed One 500 mg hydroxyurea a day. In the beginning, my platelets were at 780. After starting the hydroxyurea platelets came down to. 450. I stayed on this for a good while. Eventually, he wanted me to take two 500 mg per day because my platelets went up to around 498. I came down with Covid and my platelets went to 570. My oncologist had me to continue with two per day with the exception of Tuesday and Thursday. I take three 500 mg each hydroxyurea. I am taking one baby aspirin a day also. I feel my oncologist is being unusually aggressive and question this regiment. When I read that some people only take one or two baby aspirin a day even if their platelets are in the 500 to 600 range. I am 78 years old and in fairly good health with the exception of this issue. let me know what you think. I am considering getting a second opinion.
Replies to "I have been on hydroxyurea for approximately two years because of a ET. When I started..."
Second opinion can be helpful as long as it's with a doc who has more experience with MPNs than the original doc. Sometimes a good question to ask is, How many patients do you have with ET?
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Getting a second opinion is a great idea. The goal is a better understanding of your situation, and peace of mind with your treatment.
As you probably know, as soon as we reach 65 years, the docs consider us to be at much greater risk of strokes or clots. So they're inclined to prescribe higher HU doses.
You're right, some ETrs on this forum do just take aspirin.
And some take meds other than HU.
Lots of us take HU, though. Speaking for myself, I'm 70, generally healthy, with platelets in the 500/600 range. I take 10 500mg HU capsules a week (as well as daily low-dose aspirin). At my checkup a couple of weeks ago, I had hoped for a dose reduction. But as my platelet count remains high, I'll carry on.
Living with our "alien" condition is really hard. Asking questions and being comfortable with our treatment is essential!