Liver Transplant Survivors Symposium in Chicago

Im just coming off an absolutely crazy weekend, and wanted to share my experience at the Liver Symposium in Chicago this past weekend. The event was just as it was titled- an event consisting of people who received Liver transplants along with many of their personal Doctors in attendance. Many survivors spoke telling their stories, along with Doctors mostly focusing on treatment, and new devolopements in treatment. I sat in on almost all the topics and although I am very new to this scenerio, many, many of the treatments mentioned were familiar to me from this site, as well as from treatments my father received. I was very pleased to see Xoleda had been used in almost every patient that stood up and talked and they were all having success with it, as well as Gemzar, which were the chemo regimines used on my father. Unfortunately they werent successful on him, but I am a believer more then ever, that every person is different and every person reacts differently to treatment. The event was very uplifting, people telling stories of stage 4 cancer, many times the tumors in the liver were mets from another location, and they were beating the odds and surviving. The Doctors who spoke were so commited to the cause it was a beautiful thing. I LOVE a cancer success story. That said……Liver cancer (or even patients with mets to the liver) are at risk for Cholangiocarcinoma, it is a fact and it was “briefly” talked about at the symposium. When the Word “Cholangiocarcinoma” came up on the screen, I immediately perked up in my seat, and then slunked back down when a few sentences were said about the horrible disease only. I remember the Dr speaking said it is very rare and when detected unfortunately it is usually at a later stage.
Me, not being brave enough -yet- to go to the microphone to ask a question, managed to corner the Dr. later and asked him if there was anyone at the symposium with Cholangiocarcinoma, he said “he didn’t think so”. Then I asked what he thought could be done for early detection. He was at a loss. He said, if someone was in an accident, and had internal damage to that area, something could be seen then, but otherwise it is next to impossble to detect early. I told him about our site(he hadn’t heard of it) I told him CC isnt as rare as one would think, we get new patients and cargivers to the site everyday. He was a very compasionate Dr. and wrote down the name of the site. I dont know how much good it did, but I told him it just isnt acceptable to say “it is a bad cancer, and needs to be detected early” more research needs to be done. I don’t know a lot of the technical and medical terms but when i sat at the lunch with another of the Dr.’s and told him, my father died 3 weeks ago of CC, and that is why I was at the event to help stopl this from happening, I think he listened to what I had to say.
Marion, thank you so much for what you are doing, I don’t know a thenth of what you know, but I am willing to try to learn, so I can do my part to help bring this horrible cancer to the forfront.
Thanks for the opportunity to go and do some good.
Peace
Barbara