You can order and download your free eBook by completing an online form: http://cholangiocarcinoma.org/bookorder-ebook.htm
Thank you Cathy and Dr. William C Chapman with the Barnes-Jewish Hospital for sharing a Truly Inspirational video. Please share this story within your social networks, family, friends, and communities.Read More
We are pleased to announce the upcoming launch of
The Cholangiocarcinoma Foundation (CCF) Patient Registry.
What is a Patient Registry?
A Patient Registry is a secure database of specific and relevant health information entered by participants.
“Creating a registry of patient is the single most valuable action a rare disease community can take. The registry provides critical knowledge which make that disease easier to study, increasing the probability a treatment can be developed.”
–David Meeker; President and CEO of Genzyme
Who can participate?
• a person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)
• a family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away)
We need your help…
Join The CCF Patient Registry and help extend The Cholangiocarcinoma Foundation’s global reach by creating the only database of patient health information related solely to the diagnosis and treatment of cholangiocarcinoma.
The Mission of The CCF Registry is to assist, accelerate and support research into:
• earlier and more comprehensive diagnosis
• life-extending therapies and treatments
• new clinical and repurposed drug trials
• better symptom and side-effect management
• efforts that ultimately leading to a cure
The Vision of The CCF Registry Database is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The CCF Registry will also assist in the screening of appropriate participants for research studies and clinical trials.
What can I do now to prepare?
Gather your health records, test results and information about your family’s health history. Signup here to receive notices and updates about the CCF Patient Registry.
Please contact firstname.lastname@example.org for more informationRead More
We are pleased to announce the upcoming release of the book 100 Questions & Answers about Biliary Cancer, written by Drs. Ghassan Abou-Alfa and Eileen M. O’Reilly.
The book will address Questions like:
What is bile and what are bile ducts?
How is cholangiocarcinoma diagnosed?
What determines whether my bile duct cancer can be removed by surgery?
How will I know that my treatment is working?
No one with biliary cancer needs to fight this disease alone. 100 Questions & Answers About Biliary Cancer guides patients and their families through diagnosis, treatment, and survivorship. Providing both the doctor’s and patient’s points of view, this book is a complete guide to understanding treatment options, post-treatment quality of life, sources of support, and much more. Through 100 Questions & Answers About Biliary Cancer, expert authors use their experiences with patients to provide support and hope to those afflicted by biliary cancer.
“Dr. Abou-Alfa is a board certified medical oncologist who specializes in the treatment of primary liver cancer, pancreas, gallbladder, and bile duct tumors. His primary focus is on improving the effectiveness of chemo-resistant chemotherapies with small novel biological molecules. This book will help patients and their families navigate through the difficult diagnosis of biliary cancer.”
– Marion Schwartz; Director of Advocacy
The Cholangiocarcinoma Foundation
What is the cost for the book?
The book is free… The Cholangiocarcinoma Foundation will provide printed copies to resources libraries, cancer centers and doctor’s offices.
Patients and caregivers will be able to download a free electronic version to a PC/Mac/eReader device.
For a small donation, the book can be personalized to honor and support your loved one impacted by Biliary Cancer and donated to their local “treatment center” or doctor’s office to increase awareness and support.
Stay tuned for additional details.
Please fill out the “keep me informed” to be notified when the book is available for distribution. Announcements and updates will also be posted on our Facebook Page.
Copies of the book will be ready for distribution this coming week, in time for February 2014
Cholanigocarcinoma Awareness Month
Questions? Please contact our Executive Director, email@example.com for more informationRead More
On Thursday, Sept. 5th, 2013, a group of wonderful people met in a diner outside of New Hope, PA. We were virtually strangers, from different areas of Pennsylvania and New Jersey. The one thing we all had in common? Cholangiocarcinoma. 5 of us are patients; one of us is a former caregiver who still keeps in touch with our CC family.
By screen name, from left to right, we are: Clawler, En11, Karen, Kris00j, Mcwgoat, Rvb. I’m kris00j… I am the one in the back of our group photo.
I’ve been a member now for 2 1/2 years and have tried to meet other cc patients on the board. Previously I met Kim, who has since passed on. I also met Pam and her wonderful Lauren, and Lisa Craine, and Tiff, before her transplant!
My goal was to have a meeting with those of us in our local community and start a support group. I am no psychologist, nor do I have any training, but I thought it would be good to connect with others who are battling, and see the different approaches to this darned fight.
Of the 5 patients, we presented from asymptomatic to having symptoms. I made everyone smile because I showed up on my scooter! (It’s a 400cc, so it isn’t small!)
We all shared our “bios”. There was some sadness, and lots of encouragement. Then we jumped into the fun stuff: plans! There were many! En11 has barely been home, he shared his travel schedules! En11 has travel plans every off week. And Clawler has plans to leave for California the day following his chemo. Me? I am making plans to visit my parents.
It was wonderful to see and hear positive energy shared and how we see others trying to live life to the fullest. This fight certainly does change things.
I would like to keep our support group going, every month or two. I think it could be a wonderful experience for all of us.
A few comments from the others:
“Thank you, Kris, for facilitating this meeting!”
“Today was the first time I met anyone with Cholangiocarcinoma since my diagnosis in March. I was concerned that our meeting might turn out to be depressing, but that certainly was not the case! I was struck by how positive everyone was. It’s so nice to see that all of us are continuing to live such full lives despite this challenge– traveling, laughing, working (a little), and helping our family and friends cope with our illness.”
“Thanks for sharing your stories and treatment experiences. How refreshing to discuss all of this with people whom truly understand. I look forward to seeing you again.”
“Kris, you are the bomb! A wonderful idea that came at just the right time with a very nice turn out. It was such an intimate group in a quiet enough setting that I think we got to know more about each other than had there been a much larger turn out. It opened the door for a larger turnout, which I hope, will be the case next go ’round. “
“It was a true test of the good time we were having that we lost track of the time if it were not for Eric. They say time flies when you are having fun. And as Chris mentioned, it was fun, not depressing at all. How could it be depressing when we are all fighters and survivors or their loved ones.”
“Well, best wishes to my new friends. And same for a peaceful week ahead.”
“Well said Renee!!! I look forward to our next get together!!!”
And En11 said:
“What an inspiring group of people! I needed to know there is hope for us…and discovered courage as well. Thinking of you all and I looking forward to seeing you again in a few months. Thanks Kris for taking the lead!”
I would like to personally thank all of you for making the trip to meet with others! I know for a couple of you it was over an hour. But from the laughs and cries we had (mostly laughs) I hope everyone feels as I do: that it was well worth the effort!
And while I love the kudos, it was also very inspiring to me, to meet others battling this same disease. I hope at our next meeting there will be a few others who will join us in New Hope, PA.
We would love to have another PA/NJ CC Connection meeting in November. Either in New Hope again, or possibly in Peddlers Village area, where we are bound to see scarecrows or holiday decorations. I welcome your suggestions. I am all ears!
Please feel free to email me at firstname.lastname@example.org with your availability, so I can hopefully find a great date for most if not all of the “locals”!
Until next time, be well.
Kris / kris00j