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

Blood Cancers & Disorders | Last Active: Feb 20 10:46am | Replies (86)
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Profile picture for nigel7 @nigel7

Just dropping in to offer some empathy. Annual exam showed my blood counts dropped in 2019 and 2020. Scans and bone marrow biopsies showed nothing definitive but continuous pancytopenia (low WBC, platelets, Neu & LY) eventually diagnosed as CCUS. Like others I'm just on regular CBCs (quarterly in my case) and observation.

FWIW, discovered my WBC almost doubles post intensive workout so gym membership pays off! Bad news is that the effect is temporary.

Discussed with my oncologist/hematologist getting NGS done but not sure it's worth the (high) cost given the lack of treatment options. Any advice on value of getting NGS done?

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Replies to "Just dropping in to offer some empathy. Annual exam showed my blood counts dropped in 2019..."
Lori, Volunteer Mentor | @loribmt | Feb 20 10:04am

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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