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Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?
Blood Cancers & Disorders | Last Active: Oct 20 2:20pm | Replies (74)Comment receiving replies
Thank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown can be very scary and make us all feel alone. I hope you can continue to find support here and possibly among close friends and family. I also hope you may also feel some relief with meditation and breath work. Many apps are available to help with this. I particularly like Insight Timer. For me, it helps release some of the anxiety. Regarding your symptoms... you did say your only blood tests that have changed are your platelets. Wondering if your red blood cells, hemoglobin or hematocrit below normal?
Replies to "Thank you @pixiesusan for the update. I'm sorry to hear of these recent developments. The unknown..."
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Not yet; so far, only my platelets have gone down. The rest are still normal. I was diagnosed with CCUS in 2022, so it's been 2 years, but I read that many CCUS patients change to MDS within 5 years (give or take) of the diagnosis. However, I know that's not true for everyone.
Ah, honestly, I feel (so far) quite alone in this journey. My friends "don't really get it" because I look normal. My brother is supportive but lives 1500 miles away. My daughter, well, I am guessing she can't really face it, so she just ignores it - again, partly because I look normal.
I use the Calm app; I should use it more than I do; that's one of my goals. I walk my dog every day, a walk that is pretty and quiet and, therefore, relaxing.
No question, I have a ton of anxiety; I think about this disease every day. But some days, I can put it out of my mind (to some extent) and enjoy the day I have. On other days, I fail at that.