I thought I'd give an update; I
posted several mos. ago w/a new dx of MDS.
A lot has happened since then! Johns Hopkins and local doctor put their heads together and decided my issue looked to be more AML than MDS and suggested immediate induction chemotherapy, which I did in late Dec. into January (3-plus weeks in the hospital - yuck). I then had a round of outpatient consolidation chemotherapy.
A bone marrow biopsy done somewhere in there showed a very few trisomy 8 cells still left in my marrow. While the Hopkins doctor and my local doctor thought this might be curable w/chemo alone, my own research left me feeling unsure about this plan. I consulted with Dr. Yanovich at University of Maryland Medical Center (he came highly recommended by a friend). We found him to be very kind, while also highly informed/experienced ( a good combo).
He shared with us that my situation was a textbook case of "intermediate risk" AML, meaning I have one intermediate-risk genetic mutation (trisomy 8) and I'm early middle-aged, so the treatment approach isn't necessarily clear. In his opinion, the prudent plan is to do an allogenic transplant now, rather than hope that chemo will take care of things and have the transplant as a backup plan. He says that after relapse, transplant my be less sucessful. And I have the very great luck to have a good match in my very willing brother.
So, it looks like I will be admitted on Mar. 19 for transplant. This is all happening so fast, but in my heart I believe this is the best plan for me. I didn't like the idea of many more months of outpatient chemo, with the idea that I may end of needing a transplant at some time in the future. Cut to the chase!
I wonder if anyone else out there has had a similar experience of having a borderline or questionable MDS vs. AML dx. I'd also appreciate any words of wisdom from any transplant survivors out there. Thanks for letting me share, Kelly