Topic: 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

The  Lord is my shephard

Re: Liver Transplant Survivors Symposium in Chicago

What can I say? You know how I feel about you! That's my girl! I am so proud that you are only 3 weeks out from your own heartbreak and still you attended the very thing that could make you feel worse. You are something else. What you experienced was  the same as we did at the Convention here. Its almost like they just don't know enough about it so they don't want to talk about it. But, I really feel one day someone is really going to listen to us not just hear us.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Liver Transplant Survivors Symposium in Chicago

Barbara....like Lainy said: You are really something! Thank you beyond thank you for attending this conference on behalf of the Foundation.  There are people who volunteer for organizations even though, they have never even experienced a particular disease. but, someone like you, me, and all the others on this board, we have personal experience to share.  How much more can one present to the community at large?  I can't wait to be in Chicago for the ASTRO conference because, I will do anything to meet up with you.   Would you mind ordering a bit warmer weather for a California girl, though? 
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Transplant Survivors Symposium in Chicago

Barbara...
That is an amazing thing that you did going to the conference. And very brave!! Hopefully if we all just keep mentioning whatever we can to whomever we can, someone will want to try to do something about this terrible disease...

"Love is like the wind, you can't see it but you can feel it"

Re: Liver Transplant Survivors Symposium in Chicago

Great to hear about your weekend Barbara- you have a fighting spirit within, that can not be stifled! I am certain that at the next conference, they'll have to chain the Italian gal to her seat to keep her from voicing her thoughts & questions at the mic!  You have a great team of supporters behind you, and on behalf of the many quiet voices and broken hearts that don't have the strength to advocate as you, we are sending many thanks and virtual hugs straight out there to you in Chicago!

Best,
Tess

Re: Liver Transplant Survivors Symposium in Chicago

Thanks Guys.  It was my pleasure to represent everyone on this board at the symposium.  It is just not good enough for these Doctors to say it is a very rare cancer and it is difficult to detect early and therefore......I think CC evokes fear in Doctors, and how in the world is that supposed to give patients and caregivers any hope? I think we are on a mission!
Marion. cant wait to meet you as well.  Cant promise nice weather ever in Chicago however.  Last night I had three layers of clothes on and a blanket watching my sons Baseball game.  Today 75 supposedly, so a better day for all that live in the Chicagoland!  Winter gets very old around here.
Hugs back at you
Barbara

The  Lord is my shephard