2016 CCF Annual Conference
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Gary…..your wife is right in her suggestions! These suggestions were made by several people throughout the conference and have already been discussed for next year!
By the way…..thanks so much for autographing my book!!!Gary….thanks for pointing this out. Great suggestion; be assured that it will be taken under consideration for next year’s conference. We are ever evolving and we appreciate hints and tips to better ourselves. After all, we are here to serve the patient/caregiver community.
Thanks again,
Hugs,
MarionGary….excellent thoughts on this. I wasn’t there at the conference, but I hope to be there next year and I can see where some of your ideas would be excellent for patients and caregivers to network easier. I hope there are no reasons that some of these could not be instituted next year.
Julie T.
My wife Pat made a few suggestions:
1 – Patient / caregiver day should be a full day. There was a big turnout and many of us arrived the evening before the event. We might be able to cover more topics in lay terms.
2 – The name tags should indicate Patient or Caregiver since this was asked whenever we met or re-met someone (chemo-brain short memory). If there is a legal issue, maybe we can just put a sticker with a “P” or a “C”.
3 – The name tags can indicate the state or country where the patient/caregiver resides. Not only were we constantly asked, but it also allows you to connect with folks from your area.Agree, Jason. Industry is very interested as well. I expect that within five years we will see some incredible advances with this cancer.
Hugs,
MarionWhat an amazing conference. So many positive things happening. I was frankly amazed at all the new research and especially all the new researchers who are focusing on CC. I actually asked a researcher why all the interest in cholangiocarcinoma?
His answer made my day. He said that while all cancers have a lot of genetic mutations, cholangiocarcinoma has a very large fraction of TARGETABLE mutations. Apparently these draw researchers like flies to honey. Not too long ago, I would have said that as a disease, CC seems to get all the bad breaks. Now, maybe things are changing.
More research, more trials, more progress…maybe a cure?
I sure hope so.
Jason
Gary….so nice to see you on this board. Much work is going on behind the scene, but expect a formal write-up and other information within the next few days. Pictures, links to sessions and much more will be posted soon.
Hugs to everyone touched by this cancer,
MarionThanks for that Gary, hope you enjoyed the conference!
Scott, the 100 Questions book can be downloaded from here and hard copies can also be ordered through this link as well. I have the hard copy book and it is excellent reading. Very helpful and so worth getting for anyone, patients, carers and family members etc.
http://cholangiocarcinoma.org/professionals/educational-materials/
Gavin
The wife and I actually laughed at the prognosis when we got it, but it upsets so many friends and family if they search for cc on the internet and see the prognosis. We have had many very upset people come to the door or on the phone the first few months after my diagnosis. The good thing is most of them brought me great things to eat.
I do not have that book nor have I ever heard of it. I hope its available here in Canada. I will definitely ask, and thanks for letting me know about it.Scott,
We all get the same prognosis, but you don’t have to accept it. If you haven’t gotten a copy yet, please request a copy of “100 Questions & Answers About Biliary Cancer “. It will give you some insights into dealing with this disease. It’s under the Patients & Caregivers heading.
Good luck and please keep a positive outlook.Hi, Gary and thanks for the beautiful report. We are all most def. a force to be reckoned with and may that force be with us! CONGRATULATIONS on your 8th! Awesome that you are one of our Miracles and thank you for giving HOPE to the rest of our Family!
Wow, 8 years!!!! That gives so much hope to someone like me who is 4 months into this fight, and Im only supposed to get a year. I’m sure many others feel the exact same way.
Gary, I also attended the conference and completely agree with your comments. Well said! Our family is so grateful that the brilliant minds and passionate volunteers are working collaboratively to develop improved diagnosis and treatment options. Because of these capable and caring folks, the future is brighter.
Congrats to you on reaching eight years of survival of this awful disease. Wish you many more healthy years!
Debbie
I am a cholangiocarcinoma patient and have just returned from the 2016 CCF Annual Conference. It was my first time attending this type of event and it was so much more than I expected. Stacie and the team have put together a top notch organization with a real goal: a cure for CCA. The conference was driven by this goal. The attendees of this conference: patients, caregivers, doctors, nurses, researchers & organizers were assembled with this goal in mind and worked together to maximize the outcome. Their interaction and sharing of ideas was encouraging.
I found the conference enlightening and realize how fortunate I am to have just begun my 8th year of chemotherapy treatments. This is a tough disease with few options, but the options are increasing as a result of CCF & the increased attention they are bringing to biliary cancer.
For the newly diagnosed as well as those who have been fighting the battle I want to express my sincere thanks to this team for giving us hope. There is still a lot of work that needs to be done to find a cure, but the message I got from this event was “There are folks out there who care about us and we should never give up”.
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