I was recently diagnosed with this rare form of lymphoma. I was originally misdiagnosed with Hodgkins. This form of cancer is hard to deal with for me because of the lack of numbers associated with it. When I was told Hodgkins I saw %90 survival rates and 40 year remissions. With this I'm just left in the dark and hpping for the best. I am fortunate to be close to NIH who have taken me in to a clinical trial. Hopefully my case along with the others will start to shed some light into this grey zone.