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Profile picture for muhammadazam @muhammadazam

recently diagnosed a case of ET, advised for bone marrow biopsy and Hydroxyurea, Still convincing myself to get into it and get marrow biopsy done and reluctant to continue HU.
good advice welcomed

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Replies to "recently diagnosed a case of ET, advised for bone marrow biopsy and Hydroxyurea, Still convincing myself..."

Welcome to Connect, @muhammadazam. I think we’ve all been where you are at one time or another. Dragging our feet to avoid facing something we’d rather not. Am I close?

ET, a condition where you have elevated platelets, is generally well managed with hydroxyurea (HU).
The condition can have various causes such as an acquired genetic mutation, changes in the bone marrow itself or other factors. Your doctor wants to make sure your bone marrow is healthy and also able to produce healthy blood cells. They also want to make sure you’re properly diagnosed in order that you get treated with the appropriate medications. So that’s why they ordered the bone marrow biopsy. It goes to the heart of the blood manufacturing site…the marrow.
Living in denial isn’t likely to change the diagnosis but it may delay potential beneficial treatment. I think avoidance leaves a person carrying a heavy weight of “fear of the unknown” on their shoulders…stressful, right? I’d rather just know what I have, face it head on and move on from that. Obviously I’m a rip-the-bandaid-off person! 😅

What are your concerns? You mentioned reluctance to continue HU. Are you already taking it? Are you experiencing any side effects? Most importantly, has it been working to reduce your platelet count?

The bone marrow biopsy is usually worse than it sounds. My doc gave me Xanax and numbed the area with a topical anesthetic. It was less painful for me than dental work, and over in about 15 minutes.

Depending on your age and how good your insurance is, you might be a candidate for besremi or ruxolitinib, interferon drugs that are alternatives to hydroxyurea.

Are you having side effects from hydroxyurea? You might ask your doc if you could lower your dose and work up to what is effective for you. That can sometimes lessen side effects.

I have had ET for 17 years, and have been on hydroxyurea for 6. Hope this unformation helps.