Reply #43: Thanks and best wishes to your brother as well ...

[slipslidingaway]

MDS can progress to acute myeloid leukemia, something we are trying to avoid. My husband is currently on a trial of decitabine and tretinoin with the goal being a bone marrow transplant in September, so far one of his brothers looks like a good match.

http://clinicaltrials.gov/ct2/show/NCT00382200

We had contacted the NIH and they are very accommodating and all medical care is absolutely free, even if your brother just goes there for tests and another opinion it may be helpful. One of my cousins knows two people who are in remission after being treated at the NIH. Another resource that might come in handy for accommodations while being is the American Cancer Centers Hope Lodge, the closest one that I know of to the NIH is in Baltimore. We stayed at the one in NYC last week and it was a great experience...well of course we would have preferred being home :)

http://www5.cancer.org/docroot/subsite/hopelodge/md_baltimore/bm_index.asp

Good luck and please PM me if you have any questions, although my knowledge is limited in this area, I'll be happy to share what I've learned. Yes, dealing with the bills is enough to make one sick.

:hug: