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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 don't have a local hematologist-oncologist. I don't know if they have estimated the risk for MDS or AML yet. I'll ask them. She said my risk was low but that it could change. My doctor at Dana is responsive by email, but I think I should see her again before my annual appointment next year. I feel like there is a lot I don't know and should be asking, but again, I'm so in the dark that I'm unsure what to ask. I'm going to do more reading about it. My blood work so far is stable, other than my platelets. Those range anywhere from 30 to 55, but lately, they have been on the low end of that range. It's hard to find more people with this CCUS issue; there are some here in this forum, but they don't seem to be active. 🙁
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Good morning, @pixiesusan. I feel it would give you peace of mind to meet with your Dana doctor sooner rather than waiting for next year’s appointment, even if it’s just a tele-visit. It doesn’t appear that you were given much information and feel pretty at sea for not knowing what’s going on or even what to anticipate with your CCUS. That’s not fair to you and really increases your stress level. With your changing blood results I think you’d like a little more reassurance.
I did tag @audreyl23 @j68eis @mlarneson and @thipley in a previous response. If you’d like to ask any of them questions feel free to tag them with their @name They should get notifications and can respond to you. I hope you find some answers because it can feel really lonely having an unusual diagnosis. Hopefully you get some feedback from our members who also have CCUS.
In the meantime, maybe drop your doctor a note in the patient portal or call their office to see about setting up a tele-visit or appointment. What do you think?