I'm at 3 years post-transplant from BPDCN and doing well, though I have minor GVH issues. I have moved on, diagnosed last month, to lymphoma. After I was diagnosed, I did a lot of research and found a Dec. 8, 2014 study showing survival stats for my lymphoma had improved from around 30% five years ago to about 80% because of a new chemo regimen.
It turns out I didn't need to do all the research. That Dec. 8 article was the results of a phase 2 study conducted by doctors right here in Vanderbilt. The doctor in charge of my case told me about the study, and said their phase 3 study is showing a 97% survival rate treating Diffuse Large B-Cell Lymphoma with myc rearrangement with an regimen called EPOCH. She said part of the reason for more studies is they are having trouble believing such positive results.
That's a lot better than the prognosis was for BPDCN. In fact, I was the one who changed the heading for this section of rareshare.org to match post-2009 studies. When I got here, the heading said that the prognosis for for BPDCN was successful remission with an AML-type chemotherapy regimen followed by "quick and fatal relapse." That was true in the early 2000's, but it is now standard to immediately follow a chemotherapy regimen with a bone marrow transplant and save a significant percentage of patients. Official 5-year survival rates are not statistically sigificant yet because the immediate stem cell transplant was not common until 2009, but I understand it's at least over 25% despite how many BPDCN patients are over 60. Word is that a lot of over-age-70 patients are surviving as well, some because of Dr. Frankel's SL-401 treatment which Oldtree mentioned in an earlier post.