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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
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.
Replies to "Hi @thipley I have 2 mild mutations as well the KMT2C and ASXL1. I am still..."
How much time was there between your bone marrow biopsies? Is there a routine bone marrow biopsy schedule that doctors abide by (e.g. every two years, etc.)? I don’t look forward to the next, and my hematologist has not mentioned that I’d need another one….yet.
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I would agree. I have CCUS and I’m in a holding pattern until the end of January when I see my Doctor again. My neutrophils are generally .4 or so, I’ve had ITP for the last 20 years and I’ve got some abnormal cells in my bone marrow. (Nothing more specific than that) I never would have know I have this except I was having issues with my platelets and had a blood draw. My wbc was horribly low and that was in August. It has stayed low since.
Have no idea what is happening except to see my blood counts every week. My Doctor said at our next appointment I’ll meet with him and possibly the blood marrow failure Doctor. What? It’s very hard to deal with so much uncertainty. And also wearing a mask or skipping events, church or anything with a medium to large crowd.