[Paulag]

I have been reading these forums since my husband (now 59)was diagnosed with MDS (RCMD) (blasts under 2%) in November 2012. The advice, insight, and support has been extraordinary. thank you.

Now, I'm seeking some advice to see if there are others who know about or had experience with a Donor Lymphocyte Infusion (DLI). "A boost of stem cells from your donor."
My husband had a SCT on July 16, 2013. He was part of a clinical trial for an ATG. As I understand it, this manipulates the donor cells and reduces (not eliminates) T cells. In recovery, he had some bumps--he had severe headaches when he was home, but Dr. believes that was most likely due to the EBV virus. Was treated with Rituxin. No more headaches and EBV gone. He has had no GVHD, but does have high ferritin due to the transfusions he was receiving before the SCT and while in the hospital. The Exjade has been amazing and his ferritin has declined dramatically and liver and kidney numbers are all normal. His January BMB was good (don't have his numbers in front of me)

All his counts were rising, but then they started to stall and, then whites and reds started declining. He has been off his immunosuppressants. Doctor ordered another BMB and his MDS is back. Doctor said he needs DLI and has started process to contact donor (I hope she is willing and able to give again.) Dr also talked about the possibility of giving him Vidaza (which my husband never had) in conjunction with the DLI or if he thought the donor would be delayed too long. He also mentioned that there were a few clinical trials, but for now. the DLI is the best route. He said it was outpatient and my husband could continue to work. (He started working from home mid-March and just started going into office beginning of May and then, this all started.)

I trust his doctor and sometimes have trouble keeping all of this straight, but I just wanted to see if anyone on the forum has gone through a DLI and can offer some insight. When my husband said he wanted the SCT, I was most nervous about the GVHD--I guess I didn't think about this scenario as much especially after 9 months. Looks like the GVHD is a big concern again.
Thanks for any info.