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MDS treatment options other than bone marrow transplant

Blood Cancers & Disorders | Last Active: Mar 31, 2023 | Replies (60)
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@bdglass

Just found this forum. Not sure how to participate except to say that I'm in my early 80s, and I have MDS. I give myself a Procrit injection weekly, have blood drawn every 3 weeks. Hemoglobin never above 10, but today just under 8. Hematologist says do nothing but have it tested again next week. Meanwhile, I'm more than a little concerned and not sure at what point I will need a transfusion or other treatment.

I also have high platelet count, and I take hydroxyurea which keeps it around 400.

I appreciate words of support and suggestions for what I need to ask my hematologist.

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Replies to "Just found this forum. Not sure how to participate except to say that I'm in my..."
Lori, Volunteer Mentor | @loribmt | Mar 28, 2023

Hi @bdglass Welcome to Mayo Connect. You jumped right into the perfect conversation to ‘connect’ with fellow members who have MDS. Thank you for sharing your experience with treatments and concerns for ‘what’s next’…

As long as you’re having frequent blood checks you can place most of that worry with your hematologist to make the decisions for you as far as needed transfusions. If you start feeling weaker than usual, more fatigued, develop a fever, have unusual bleeding or bruising then you may not require any transfusions for blood or platelets. Has your doctor given you any guidelines for when you need to call?

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