← Return to Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
DiscussionAnyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Oct 20 2:20pm | Replies (74)Comment receiving replies
Replies to "@audrey123 Welcome to Connect. There are members who share this diagnosis. https://connect.mayoclinic.org/discussion/dose-anyone-else-have-ccus/ Some members who have..."
My first bone marrow biopsy was in 2012 due to an incidental finding of ANC ~700, WBC ~3, PLT ~100K. I saw a hematologist every six months for 6 years with stable and slightly improved counts. In 2018, I had a second bone marrow biopsy. There was no significant dysplasia and no real change from 2012. At that time, I also had a rapid heme panel (NGS) that revealed DNMT3A and TET2 mutations with high VAFs (~40%). Since 2018, I've had lower than normal but stable blood counts for four years. In the past two years, my counts have begun to decline further. My ANC and WBCs remain low but are up a bit for me. This is likely due to Prednisone I've been on. Platelets have declined to between 75-80K over the past four months in a row. Repeat bone marrow biopsy has not revealed any significant dysplasia and no blasts, fortunately. The diagnosis remains CCUS. However, I have acquired a third mutation (CUX-1). My only symptom is fatigue. Comorbidities I have include psoriatic arthritis and atherosclerotic heart disease. My physicians think both are related to CCUS.