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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
Good morning, @pixiesusan. I hope you had a lovely Thanksgiving. Our daughter flew down from Minneapolis to join us in Florida for a week over TG…that was the perfect way to kick off the holidays early. But I’m going to be in trouble I think…I already had to break out the elastic waisted pants! 😂
It’s interesting to read that your experience with some other support groups online is lackluster. I’ve been finding that lately too. I’m in a couple of groups for bone marrow transplants. We were all fairly active a couple of years ago but now, what used to be the most prolific group, sits idle. There’s one other person besides myself who tries to instigate a good discussion and it just fizzles again. We’re all still alive and kicking but interests are elsewhere? Not sure.
Anyway, I’m sorry you’re feeling abandoned!
You’re not alone here! ☺️ There’s always someone around to chat with. Your CCUS diagnosis isn’t common and members who share that blood condition aren’t numerous. But if you would just like have some good conversations, there are a bunch of other fun support groups in the forum that are always active!
These are just a few of the lighter conversations to pique your interest.
Have you visited “Just want to talk”? https://connect.mayoclinic.org/group/other/
You’ll find discussions like:
~Journaling, the right stuff for you?
https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
~What’s outside your picture window today https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
~Let’s go walking! Join me for a virtual walking support group
https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/
~Do you have an inspiring or favorite quote to share?
https://connect.mayoclinic.org/discussion/do-you-have-an-inspiring-or-favorite-quote-to-share/
~How about a laugh (hopefully)? https://connect.mayoclinic.org/discussion/how-about-a-laugh-hopefully/
~ Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
What pets can do: Health and healing
~ https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
You mentioned having a blood work coming up this week. Are you feeling that there might be a change in the numbers?
Replies to "Good morning, @pixiesusan. I hope you had a lovely Thanksgiving. Our daughter flew down from Minneapolis..."
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It sounds like you had a great Thanksgiving; I did, too, with family and my dog. Wow, thanks. That's a great list; I'll check some of those groups out, especially the pet group.
I have a standing order at the lab to get blood work whenever I walk in; my doctor wants me to do it about once a month. I often put it off another couple weeks because I don't always want to know (silly - I know). I don't ever know what to expect, but I more or less feel the same as I have for the past 8 months or so. Still tired, and I still have bone pain at night. My platelets have been inching down, but not to the point where they want to do any treatment since I'm doing ok right now.