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

Blood Cancers & Disorders | Last Active: Jan 22 8:02pm | Replies (18)
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@mlarneson

I CCUS and I’m waiting to see how serious it is. While I wait, because of the possibility of infection, I take my blood count every week and never know if I can be part of a group, see people or need to isolate. It’s very frustrating.

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Replies to "I CCUS and I’m waiting to see how serious it is. While I wait, because of..."
Ginger, Volunteer Mentor | @gingerw | Dec 2, 2023

@mlarneson Welcome to Mayo Clinic Connect. Honestly, I had to go look this condition up!

What are your doctors saying about the situation you are in? There is an article from ASH Clinical News, linked here, for you to look at. It is my thought that you take all precautions those of us with compromised systems need to take: hand sanitizer, social distancing, masking, washing hands frequently, avoiding crowds/those who do not want to take similar precautions.

https://ashpublications.org/ashclinicalnews/news/6306/Clonal-Cytopenia-of-Unknown-Significance-To-Treat
When do you see the docto next?
Ginger

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mlarneson | @mlarneson | Dec 3, 2023

I see him January 31. He needs to consult with other Doctors and monitor my blood draws. I saw him the beginning of October. This has been going on since mid August. They trying to figure out how and when to do treatment. Which is what CCUS is. They’ve tried all the tests and it’s difficult to pinpoint the right thing to do at the right time. My Doctor gave me guidelines depending on my numbers. I’m struggling with the holidays and knowing I can’t do some of the activities but need to see my kids and grandkids. Most of this issue is me wanting a clear answer to what I should do and this isn’t a clear situation!
The article you recommended is one I saw online and is my guideline for understanding all this. It’s great.

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Colleen Young, Connect Director | @colleenyoung | Dec 3, 2023

Hi @mlarneson, I add my welcome. I moved your question to this similar discussion:
- Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
https://connect.mayoclinic.org/discussion/dose-anyone-else-have-ccus/

I did this so you can more easily connect with other members living with CCUS like @pamrod02 and @j68eis among others.

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