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Anyone else with CCUS?

Home forums Patient Message Board Anyone else with CCUS?


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    Hello all. I’m 40 yrs old and was diagnosed with CCUS (clonal cytopenia of undetermined significance) in December of 2019. My pathology report said my results were highly concerning for an evolving myeloid neoplasm. I know people with CCUS have around a 75% chance of progressing to MDS or some other myeloid cancer. I have read about my BMB and blood test results and they are all associated with cancer. It would seem that this is the beginning of something and I simply don’t meet the specific criteria for MDS or any other myeloid neoplasm yet.

    My question is, is there anyone else out there who started out like me, with CCUS, but progressed to MDS? Or who currently has CCUS and is being monitored? If so, I’m hoping you might be willing to share your experience. I know that focusing on an uncertain future is not helpful but I’m having trouble letting go/moving on. Thanks in advance!


    Hi Erin…….I wrote about it in the RUNX1 category on the previous page. Donna


    Thank you Donna 🙂

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