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Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Dec 16 12:28pm | Replies (81)Comment receiving replies
I'm still figuring out how to use these forums! My doctor has had me in wait-and-see mode since 2017, but I did have changes in 2022. I only get blood work done when I feel the need (lots of bruising); I have a standing order for it. Until this year, it was maybe every 3 or 4 months. This year, it's more often, but not by much. I keep wondering if I should get it done more often? Is enough being done? I don't know much about my mutations and don't even know what questions I should be asking. I'm a natural worrier, and now, reading how much other people know about their conditions, I feel very left in the dark.
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Good morning, @pixiesusan. I think we’re all pretty much natural worriers…especially when it comes to medical issues. And blood conditions, well, they can be challenging just because our blood, bone marrow and immune systems are so incredibly complex. Some blood conditions can also take years to progress (if at all) which can add to your stress and puts you in a holding pattern.
You’ve been diagnosed with a blood disorder called Clonal Cytopenia of undetermined significance. A mouthful for a condition where your body isn’t making enough of a certain blood cell and there is no apparent cause. So there’s little that can be done at this time for treatment except to keep an eye out for any changes in blood work, symptoms or upward/downward trends in blood numbers.
You mentioned that you’re having more frequent blood work this year. What are the results showing? Are there upward/downward trends in those numbers? Doctors look for patterns (trends) and that can help them determine if a condition is potentially progressing.
With your diagnosis, there were most likely some NGS (next generation sequencing) genetic tests run. This checks for any potential acquired mutations in cells which could be causing the CCUS. What did those tests show?
You’re being seen annually at Dana Farber. They are instrumental in developing a tool to estimate the risk of MDS or AML for patients with CCUS or CHIP. Do you know if you’ve had that risk test?
Found this article for you: https://blog.dana-farber.org/insight/2019/04/what-is-clonal-cytopenia-of-undetermined-significance-ccus/
Are you being seen locally with a hematologist oncologist or just annually at Dana F? What does your local doctor say about the changes in your blood numbers?
Now that you’re in the forum, and reading about what other members with CCUS know of their conditions, that will also help you with what questions to ask…anything that you feel in the dark about and want clarified.
Maybe it’s time to sit down again with your doctor to get some straight answers. Write those thoughts down, make a list of questions then take those with you to your doctor.
How often are you actually seen by your local hematologist oncologist or do you just go in for blood work?