Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?

Posted by j68eis @j68eis, Sep 24, 2023

Last bone marrow biopsy revealed a couple of gene mutations in the KM2TC And ASXL1

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mowassell | @mowassell | May 14 12:36pm

In reply to @loribmt "Hi @nigel7 and welcome to Connect! So glad you dropped into the conversation to share your..." + (show)

@loribmt my oncologist here in Oklahoma sent me to Mayo in 2021 to find out why so many of my counts kept dropping. As a result I had bone biopsy and NGS there and they discovered the mutations and I was diagnosed with CCUS. As a result of that my original oncologist (who still monitors me in conjunction with Mayo) now tests ALL of her patients using NGS to great success. I’m so fortunate to have such amazing doctors.

mooco3 | @mooco3 | Jul 13 3:43pm

In reply to @tdancer628 "I have CCUS with only the TET2 mutation, but with a VAF of 86%. Low white..." + (show)

@tdancer628 do you have multiple tet2 mutations?

tdancer628 | @tdancer628 | Jul 14 8:09am

only one, and I do not have any other ones. I have CCUS - really low white blood cell count and low ANC. My VAF on the TET2 mutation is very high at 86 at the last BMB in January.

Lori, Volunteer Mentor | @loribmt | Jul 16 10:30am

In reply to @mooco3 "@tdancer628 do you have multiple tet2 mutations?" + (show)

Hi @mooco3 Welcome to Mayo Connect. We have a great community here where other members with similar medical conditions can ‘connect’ with each other! Since you tagged member @tdancer628 regarding mutations for CCUS, were you also diagnosied with CCUS (Clonal Cytopenia of Undetermined Significance)?

mooco3 | @mooco3 | Jul 16 11:14am

In reply to @loribmt "Hi @mooco3 Welcome to Mayo Connect. We have a great community here where other members with..." + (show)

@loribmt hello, my dad has been

Lori, Volunteer Mentor | @loribmt | Jul 18 9:16am

In reply to @mooco3 "@loribmt hello, my dad has been" + (show)

Hi @mooco3 Was your dad just recently diagnosed with CCUS? If so you probably have several questions. If you haven’t already, it might be very helpful for you to return to the beginning of this discussion. As you read through some of the replies, you’ll see several links to articles that are good tutorials.
There’s also this one from dovemed.com
https://www.dovemed.com/diseases-conditions/clonal-cytopenia-undetermined-significance
How is your dad feeling? Have his doctors discussed a possible treatment plan for him or is he just in active surveillance for his condition?

tdancer628 | @tdancer628 | Jul 20 12:57pm

I have been a member for a while but do not post usually. I also do not know who to reply without it going to the entire group.

Lori, Volunteer Mentor | @loribmt | Jul 20 2:37pm

In reply to @tdancer628 "I have been a member for a while but do not post usually. I also do..." + (show)

Hi @tdancer628
If you want to send a private message to someone, simply click on the person’s avatar (where the photo should be on the left side of the reply). This should take you to their profile page. Under the ‘picture’ you’ll see “send private message”.
Click there and you’ll get the prompt to type your message to that person. Let me know if you need help, ok?

mooco3 | @mooco3 | 1 day ago

In reply to @tdancer628 "I have been a member for a while but do not post usually. I also do..." + (show)

@tdancer628 sent you a private message

mooco3 | @mooco3 | 1 day ago

In reply to @loribmt "Hi @mooco3 Was your dad just recently diagnosed with CCUS? If so you probably have several..." + (show)

@loribmt blood tests every 3 months

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