Should I start decitabine for CMML? Looking for patient experiences

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.

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

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.

I was diagnosed with CMML in December 2025 and was on VIDAZA for 9 months. Then the bone biopsy showed it progressed to AML. I saw a dr specializing in AML & she did genetic testing and found 2 mutation driving AML. So, now I’m on decicibine and 2 other pills that target the mutations. So far, I’m doing very well and my only side effect is itchyness. They said I could get nauseous or have diarrhea but neither had happened. I would give it a try. Originally, I waited 10 months before starting treatment which may be the reason it progressed to AML