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Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Aug 3 8:37am | Replies (96)Comment receiving replies
I have CCUS with only the TET2 mutation, but with a VAF of 86%. Low white blood cells. No anemia. My blasts are only at 2%. Started in 2020 just after a bad bout with COVID. I wear masks a lot, wash hands a lot and follow a neutropenic diet. I have found YouTube recordings from the Healthtree and MDS Foundations to be very helpful to understand the situation. Vanderbilt has a biorepository for CCUS and CHIP folks (CHIVE) I am starting to feel tired and have night sweats. Have seen one clinical trial for CCUS, but the medicine has a side effect of lowering white blood cells. Wish there was something to do for it.
Replies to "I have CCUS with only the TET2 mutation, but with a VAF of 86%. Low white..."
@tdancer628 do you have multiple tet2 mutations?
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@tdancer628 Was that trial at Dana Farber? they have one for CCUS, had my bone marrow for the trial and I couldn't get in it as I was still too healthy (yay).