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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 "Thank you for your reply and inspiration. I'm sorry you've been dealing with this for so..."
My mutations are KMT2C and ASXL1, they were detected in a past bone marrow biopsy.
the ASXL1 didn't even show up in the NGS. the genes that were impacted are as follows
TERF2 VAF = 60.7%
FAT1. VAF= 51.1%
AKAP6 VAF= 47.9%
ATM VAF= 37.9%
DUSP22 VAF=22.4%
KMT2C VAF= 2.5%
I believe the only ones they seem to be concerned about are the KMT2C wich was at 3.4%
and the ASXL1 at 1.35%
To me this is all Mumbo Jumbo.
My counts have fluctuated for the past 25-30 years. I started out having a couple of lymph
nodes biopsied and my 1st BMB was in 1999 when my white count was at somewhere below
3.0.
On the lighter side i never really get sick or ill. I did have a rather large pulmonary embolism in 2017 and another BMB a year later. had another BMB in 2023, and my last one a couple of weeks ago. ( I think I'll start charging for bone marrow). The Mayo clinic is wonderful.
Perhaps they will find a cure to stabilize those wacko blood counts. I'd hope for a pill. My Dr
at the Mayo Clinic did mention that these mutations may clear on their own . Who knows.
we can only hope . I believe miracles happen to everyone every day.
So to everyone with this wacky diagnosis heads up.