Hi Kev,
Great advice. CBCI sounds excellent! I'm hearing about slowing down the treatment from others. Dr Araten put an AA friend of mine who has asthma in ICU for 1st day treatment. You can be sure I'd choose the center willing to have interventions ready, planned if needed. I had A-fib once and have asthma.
Guess what. Years ago when I was told I needed a BMT I had an evaluation at Fred Hutchinson. A doc pulled me aside and told me their current AA regimen was an MDS one. Too toxic and not necessary for AA. Well I looked him up recently and he's in Colorado:
http://www.bloodcancerinstitute.com/....htm?id=254361
Not that you need his services but his honesty and patient advocacy is to be
appreciated. He'd recommend him to someone who needed him.
Well my preliminary bmb report is back and they don't find AA. But neutrophils are absent in marrow. Now they are checking for MDS and other. Hum, other doesn't sound good. But at Dx my marrow was first hyper, 1 month later it was hypo. A few months after that the marrow was 10% cellularity and a large PNH had suddenly appeared. So my point is even if I get news I don't like, I'll retest in a couple of months and perhaps the picture will be different and better. Sure I developed PNH but it crowded out the AA! PNH cells are abnormal but at least I had cells:-) Strange how the marrow can change so quickly. Mine must be quirky like my personality. Actually it must be very sensitive to something, if only I knew what.
So I have an appt with a very good local hospital, 2nd opinion. Will probably see Dr Mac for his opinion. I want at least 4 opinions:-) Not sure of his expertise on MDS. But since he trained at the NIH he must know MDS stuff. He could always run it by someone else if unsure. I'm older now so MDS wouldn't be unexpected but that was my initial Dx in 1998 and turned out to be wrong. Nearly got a BMT for it until Fred Hutch said the dysplasia is "not significant."
Guess I'm back to square one (other than known PNH) and have to track down all my past bmb slides to be checked for case reviews. That was 17 years ago when I criss crossed the county to get definitive dx. So at least I'm experienced in searching for a dx.
Just in case I have a beautiful wrought iron horse on my mantle along with a particularly cute rabbit. Lol. They've been my hope reminder for many years. Lot of other treatments out there for all kinds of diseases so not worried yet. But will get out the MDS books/sources just in case.
So happy for you that you're doing well.