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@1dgrab

Pixiesusan, so good to hear back from you. My first bone biopsy in Oct. of 21 had me with CCUS. Almost a year later Sept. of 22 second bone marrow biopsy noted " The patients history of clonal hematopoiesis with TET 2 mutation is noted. Given the degree of thrombocytopenia and morphologic dysplasia, the current marrow is best classified as Myelodysplasia with Single Lineage Dysplasia. MDS-SLD" There is also the question could pathology got it wrong? I don't know? I have not had another biopsy since then. I had a Blood Flow Cytometry that showed "raised concern for myeloid neoplasm." Doctor explained to me that was MDS. All of this makes my head spin. Either way whatever it is low platelets are the problem and getting lower can cause spontaneous bleeding for both of us and the treatment would be the same. You are correct about the "low risk" pertains to our chances of getting AML. They haven't changed my risk factor even with them going lower. One book I read said " in the 20,000's/mm often indicates the MDS is evolving from lower-risk to higher risk." Others don't agree with that. I have read that people with higher risk (meaning all three cells involved) get down in the 20's and even lower and are not on treatment for the platelets. The book also stated that "low platelet count occurs least commonly as and initial sign of MDS." We are rare! I am 68 have some mobility issues that is why my doctor told me I cannot go lower than 30,000. She has a concern for me falling and causing a bleed. Like you my low platelets stated quite awhile ago in 2017. So I guess you could say we both are on quite a journey. I would love to talk to others with just platelets and see what their journey has been but seems to be so few of us. Hope you are feeling better and I look forward to following along with you on your journey if you post......take care.

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Replies to "Pixiesusan, so good to hear back from you. My first bone biopsy in Oct. of 21..."

We certainly are on a journey, and I have realized how little I know about what is going on with my health. I honestly don't think that's the fault of my doctor; in the beginning, I didn't have any genetic changes, and I was 100% wait-and-see. I believe they detected the first change in 2022, but I skipped 2 years prior to that due to COVID (my choice, but it doesn't change anything). When I went in 2022, I discovered a problem with my TP53 gene via a blood test at Dana Farber. And even then, no one said MDS or cancer; it was just, "We will continue to get frequent blood work and see." I get my blood work locally, so it's not any genetic testing; it's just CBC, keeping an eye on my platelets. As I said before, my platelets are drifting down. I'm still CCUS and not MDS, so far. It doesn't seem like there are many of us around. I am on a Facebook group for MDS, but many of the comments in that group go way over my head. I need to learn more about this; however, since I'm a world-class worrier, I'm not sure that's good for me. 😉 But it's what it is, and I think knowing is better than not knowing. I hope you are feeling okay right now. I'll send you some good zen.

PS I know I answer these quickly like I'm waiting, but I work online, so I see the emails when they come in!