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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)
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Hi @nigel7 and welcome to Connect! So glad you dropped into the conversation to share your experience with CCUS.

I can sure appreciate your desire to learn as much as you can about the condition. So it’s a good question about whether or not it’s worth the cost of having next generation sequencing panels run. It’s difficult to know if the results would give any valuable information vs the cost. It often helps to have a sounding board, so hopefully other members will share their opinions on NGS.

I recently read an article on CCUS that I bookmarked. You might be interested in read it too. Here’s the link to AHS Publications article on CCUS: To treat or not to treat. https://ashpublications.org/ashclinicalnews/news/6306/clonal-cytopenia-of-unknown-significance-to-treat

Have you discussed the usefulness of having an NGS done at this time with your hematologist?

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@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.

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