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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
I would agree. I have CCUS and I’m in a holding pattern until the end of January when I see my Doctor again. My neutrophils are generally .4 or so, I’ve had ITP for the last 20 years and I’ve got some abnormal cells in my bone marrow. (Nothing more specific than that) I never would have know I have this except I was having issues with my platelets and had a blood draw. My wbc was horribly low and that was in August. It has stayed low since.
Have no idea what is happening except to see my blood counts every week. My Doctor said at our next appointment I’ll meet with him and possibly the blood marrow failure Doctor. What? It’s very hard to deal with so much uncertainty. And also wearing a mask or skipping events, church or anything with a medium to large crowd.
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Thank you for your response. Just to confirm, you have your blood drawn every week? I think you’re extremely fortunate to not have any symptoms such as fatigue. I know that I’m definitely more susceptible to getting sick, and it’s lame considering I have a little one in Cub Scouts/grade school. I’m always asking him to wash his hands.
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Hi @mlameson,
I can certainly understand your frustration about having to wear masks. I use the KN95
masks . Sometimes I'll wear one which is easier to breath through, depending on the size of the crowd. I still attend my church meetings, take the sacrament. ( I have asked to have it passed to me first prior to other hands going in.) not really sure if it really makes a difference.
my neutrophil count has been as low as .1 and up to .5 . my paltelets fell to 13,000 and they gave me 1 unit of platelets last weekend. my white count is at 1.9 so its held its own for 4 days now.
My hope is that the Mayo Clinic will have answers soon, and simple solutions to correct the issue . Hopeing for better results next week on my CBC tests.
feel free to chat.