[Lisa V]

I don't think Ken was ever tested for TERC mutation either. Not too many places do that, do they? I've mainly heard of it being done at the NIH. He was tested for PNH at diagnosis, but not since then, as he's never shown any symptoms of it.

He was getting annual BMBs for the first few years, I think it was the 3rd one that turned up his trisomy 8 mutation, which changed the official diagnosis to hypoplastic MDS, although the treatment regimen and prognosis didn't change. He initially showed it in 25-30% of the sample cells, but the 2 subsequent biopsies showed it at only 5%. He hasn't had a BMB in the last couple years, since his counts have been so stable. I'm kind of curious as to what's going on with the trisomy, as well as his cellularity, but I don't want to be the one volunteering him for an uncomfortable and expensive procedure if the doctor doesn't feel it's necessary. The feeling I got was that unless something was going on with his peripheral blood counts that indicated a change, they don't see the need to keep testing him every year.