[Darice]

Thanks, Carrie . . . you are so right about activity . . . and the lack of other tMDS patients . . . it really is a very different disease from the de novo MDS . . . have you found any other reliable source of good information? I have been somewhat active with an online chat group through LLS . . . but it's NHL, not MDS . . . and there are two groups on Inspire that I have somewhat followed. But, again, not specifically MDS, let alone the tMDS. Guess there really just aren't a lot of us. Let's us be sure to stay in touch.

rar: you are right that age shouldn't be the primary or only consideration when contemplating stem cell transplants, but it is a factor. Stem cell transplants are pretty strenuous, and I'm glad you are doing well with yours. I think I read somewhere that the median age for allo SCT is something like 40 . . . yours at 74 is more of an exception. Although, the bone marrow and blood issues that call for SCTs are certainly more likely among the older population, so that median age will probably continue to rise as we get better and better at the procedures. Carrie's hubby and mine each had an "auto" SCT 8 years ago, and things have changed greatly since then, but I know my hubby was considered on the edge of being too old for that one . . . now it would be much more common for someone of his age to get one.

My husband has been fighting cancer for 13 years now and has about a gqzillion co-morbidities. About everything that could go wrong, has. He is incredibly tough and strong and a good fighter, but he is so very tired. I think I counted up recently that he has been through 9 or 10 distinct chemos, some more than once. We would battle the cancer into remission and then it would recur or metastasize. He has had numerous surgeries and radiation as well to try to beat it back. For the past four years he has been battling UTUC (upper urinary tract urothelial carcinoma, a form of bladder cancer that started in his kidney/renal pelvis) with numerous surgeries and chemos. Also some skin cancers along the way and a probable thyroid cancer that we haven't really followed up on because of everything else going on. He is diabetic, got Hep B from a transfusion early on in the NHL (2002), went into A-Fib (probably due to stress on the heart caused by some of the chemos) during a surgery for a major infection in his leg that was never identified and again during the SCT in 2008 . . . he is on medication to prevent that from recurring, and that interferes with a lot of meds he might otherwise take. He does not do well with pain meds (delirium, etc.) and is generally pretty sensitive to many medications. He has had pneumonia (Viral, bacterial, and fungal) 15 to 20 times (because his entire system is so weakened by the battles) noro virus a couple of times, staph, pseudomonas, mersa . . . you name it. Sometimes they haven't even been able to name the infection because he hasn't had the white blood cells to make the pus that they could analyze to ID it. In addition, it would be hard to find a good match for him; he has no relatives in this country, he is German. His brother is in his 80s and his older sister has multiple myeloma. SCT is really just off the table for him . . . I know he would be game to try it again, but the strength just isn't there.

I see you are in Colorado . . . we are in Colorado Springs . . . went to Nebraska for the SCT . . . best choice/option for us at the time.

Thanks!
Darice