Going back a few bits in this thread, I guess when I said I didn't know how to reply, I meant "privately," but if I do that, it doesn't help others learn. I should have picked a different "handle" for this forum because I haven't told most people about my diagnosis, except my immediate family (2) and a friend.

I had a BMB back in 2017 by a local hemo. He sent me to Dana Farber saying something bad was wrong (he mentioned HES and MDS). At Dana, they got that BMB, ran more tests on it, and said I looked Okay other than my platelets. That maybe I had ITP. I went with that. Then, I think it was in 2022, at my annual appointment at Dana, I was told that something had changed with my bloodwork; looking back over my doctor's notes from that visit, it says they did an RHP, and that was normal except for a single mutation on my TP53.

I guess I was formally diagnosed with CCUS in 2022. But I didn't really understand that until my visit in May 2024.

Another RHP was not run at my visit in May. The visit notes said I didn't want it, but I don't remember being asked or saying that. Until your post, I didn't even know what RHP was.

At that appointment, we discussed my platelets, and Dana has no desire to treat them unless they get down to about 20 or I have some sort of bleeding issue, which I have never had.

My doctor at Dana said if I want a second opinion, she can set that up for me, or I can do it on my own; she is fine with either option. It sounded like she was sure that doing nothing is the way to go right now. My initial feeling (and again, I don't know anything about this) is not to get a second opinion yet but to wait until maybe they recommend some sort of treatment and decide then.

Are BMBs always done in office? I had mine in a local community hospital but in the hemo exam room. I was on my first visit to the local home due to another doctor catching (finally) my low platelets, and he said, "let's do one now." It hurt. Can I get sedated for it?