His whole treatments were basically reserach, because it was so rare that they had no protocol to go buy. He served 3 tours in Vietnam, and towards the end, the scientists finally determined that the cancer was probably caused by agent orange exposure. This tiny man - maybe 5'6" if he stood up straight, maybe weighed 140 lbs battled for TEN YEARS just to have more time with my mother and me (he was really my step-dad, but more of a father to me than the "real" one). We lost him 2 years ago February.
I think what I want to say, with the uniqueness of his disease, and the right doctor team, and his willingness to try anything to hang around a bit longer, he was able to fight and do pretty good for 10 years and he was stage 4. He had 2 periods of remission thrown in, but then it would come back about a year later. I truly do believe that a lot of it is in the fight and just how much a person can handle. My Ellis was tiny, but he was strong. And he made our family a family. He showed me how I want to act if I'm ever sick - you just keep going on, you keep doign the important things (family/friends/fun), and you keep fighting and asking questions and trying whatever they want you to try if you think you can do it. 10 years was a long time to have with someone who was only expected to live about 2 after first diagnosis.
You, geckosfeet, you fight the good fight, however you can fight it. You let us know how we can help you fight it, and let your family know how they can help you fight it. It's definitely a team sport, at least that is how it felt for our family. Ellis was the quarterback, the doctors were the coaches and we were his defensive line.
I am sending healing, good, strong thoughts your way.