[Sue&Dave]

My 59 y/o husband has been in watch and wait mode since March 2015 when he was first diagnosed with MDS. We have strongly considered a SCT, but since he does not have a donor and a cord blood/HAPLO transplant is our only other option, we've held off on that decision (plus he had 3 brain surgeries over the summer for a subdural hematoma and resulting infection). In the past month or so we have noticed a big change. He has become much more fatigued and his numbers continue to slide. He's having blood work every two weeks and his local oncologist yesterday said they are concerned about his HGB (9.1) and HCT (26.8), so they will be testing his B12 and ferritin levels next week. All of this to say it appears we are moving out of watch and wait and into treatment, either vidaza or dacogen, but still haven't taken the idea of a SCT totally off the table. When he was first dx'd in 2015 his local oncologist advised us to find an expert in MDS, since SCT's are not performed in our hometown in central New York. He assured us that he will work closely with whomever we choose and can carry out any treatment they prescribe (except of course SCT). We now travel to NYC to Sloan Kettering (about 6 1/2 hours door to door) for consults. So I am curious how others have handled having your MDS expert so far away. I expect there will be transfusions and possibly hospitalizations during his treatment and am curious how others have handled not being in close proximity to your MDS expert may have affected your treatment and/or outcome? Also, how do you manage traveling for your consults in a weakened state?