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Should I start decitabine for CMML? Looking for patient experiences

Community Member

2 months ago

I was diagnosed with CMML in August of 2025 after having a bone marrow biopsy due to my low platelet count that is currently 46. My oncologist has recommended that I begin treatment with decitabine, but I am reluctant to do so. Other than a bit of tiredness, I feel fine and we have agreed to watch for a while longer (3 month checkups). If anyone has taken, or is currently taking decitabine and would be willing to share their experience with me, I would be very interested and appreciative.

3 comments

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Community Member

2 months ago

It's completely understandable to want to hear from others who have walked this path before making treatment decisions. Many community members find it helpful to learn about real experiences with medications like decitabine when weighing their options with their medical team. Hopefully some members who have experience with this treatment will share their insights to help inform your discussions with your oncologist.

Community Member

a month ago

Hello William my name mike and yes I was diagnosed with CMML in October of 2024 and they started my on decitabine and they told me to take this pill at night before bed time and it didn't have any side effects and took it for 6 month before my bone marrow transplant

Community Member

7 days ago

Hi Mike,Would you mind sharing your age? I'm 76 and in relatively good health other than the CMML. There has been no discussion of bone marrow transplant thus far. I'm wondering if it has to do with my age.

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Should I start decitabine for CMML? Looking for patient experiences

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