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Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Oct 20 2:20pm | Replies (74)Comment receiving replies
I had bloodwork yesterday, and my red and white cells are in the normal range, but my platelets are lower, at 32. So, I guess I'm pleased with it overall. My doctor doesn't have a hard and fast line where I'd start treatment for the low platelets. So far, I'm not a bleeder (but of course, I bruise easily) so we are "wait and see" on the platelets. My doctor has told me she has no explanation for my bone pain and fatigue. Yet, in a few groups, I've found people with CCUS or pre-MDS have said they always have bone pain and fatigue. So I don't understand why my doctor says this. To be fair, some of the others I just described said their doctors had said the same: no reason for bone pain. I'd like to keep in touch; my platelets keep going down, too, so I am reasonably sure those drugs are in my future too. I've been told (not by my doctor but by others in various groups) that my gene mutation is the worst one: TP53 (the dreaded TP53, as one group member told me). What I don't understand is the difference between CCUS, low-risk MDS (I believe the "low-risk" part refers to your chances of getting AML), and pre-MDS. I honestly didn't know you could be MDS if you only had platelet involvement, but I'm new to all this and have so much to learn. I want to thank everyone for being patient with me and helping me figure this out. I've had low platelets since "at least" 2014.
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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.