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Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Dec 16 12:28pm | Replies (81)Comment receiving replies
Hello. I was diagnosed at age 49 with CCUS back in September after a bone marrow biopsy. I was found to have a low level mutation in my KMT2C gene. I’m supposed to follow-up with my doctor every six months for an exam and bloodwork. It’s a “wait and see” thing for me. There has been no other treatment recommended. I’m going to follow-up with him or his nurse to see if I should be avoiding anything. I have been given no instructions or counseling, and I’m scared. Will I be around for my son to graduate from high school, to see him get married, and to have children? Is dying early inevitable from cancer, a heart attack, MDS or AML? 😔
Replies to "Hello. I was diagnosed at age 49 with CCUS back in September after a bone marrow..."
Hello. I got my results back from the next generation sequencing that was done back
in September. Just showed a low level KM2TC at 2.5 which is less than it was with the
bone marrow biopsy. The ASXL1 didn't show up on the blood panel at all. I don't know what it all
means. Hopefully the remedy for my low counts is an easy fix. I'll find out this week.
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Hi @thipley
I have 2 mild mutations as well the KMT2C and ASXL1. I am still waiting for for results on
my Next Generation Sequencing. I Hope it comes back soon. I may have had these mutations for years. my history consists of 3 lymph node biopsies, and 3 bone marrow biopsies. the latest of which indicated the low level mutations. I, like you, am concerned and scared. my white count is 1.9, neutrophils are .2 and platelets at 68,000 . Whats really odd to me is that in February of this year all of my blood counts were normal. first time in 28 years.
I pray every day that those counts will increase again, and that the Mayo clinic will receive
answers soon. Until then CBC tests are the norm. I wish there were instructions for people like us. Some kind of guide as to what to do. I get so tired of wearing masks every where I go.