Blog Post

As the “instigator” who 11 years ago blissfully started getting mothers of active-duty Marines and eventually Marine vets to meet together to share experiences, information, and to just be with others “who get it”, I’m doing it again thanks to CCF.   At the last annual conference, I met Caitlin Fortuna and her youngest daughter.…

Over three years ago I was diagnosed with an incurable cancer, at the age of just 39 when my 3 children were under the age of 5. Since then I have undertaken countless treatments including 30 chemotherapy cycles spanning 4 types, radiation, cyberknife, SRS, ablation, dendritic cell therapy, targeted drugs and immunotherapy, always with the…

Since 2015, the Foundation has awarded more than $1.9 million in funding for innovative, high-quality research. SALT LAKE CITY, UTAH, USA, August 6, 2019 — The Cholangiocarcinoma Foundation (CCF), a nonprofit organization funding novel research for bile duct cancer, has awarded the 5th cycle of its Research Fellowship Program. CCF is pleased to support 7 projects for…

A          Cancer AGES us but isn’t aging what we long for?! B          It BLINDS us to far away, future concerns. It brings us to a “near- sighted” living where we don’t miss the present. C          Cancer gives us CAUSE – a reason to try treatments and trials for new therapies; not only for our own survival, but for those who follow…

Marion and I worked together daily for over 10 years building the foundation and we’ve talked often since her retirement. She worked with many of you over the years to make sure the patient voice was considered in all endeavors and she admired the way you treated “her” patients. She took great pride in her…

Imagine for a second that there is a checklist that describes the ‘typical’ cholangiocarcinoma patient.  An impossible task, I know, as we are all so significantly (or perhaps maddeningly if you’re the doctor trying to fix us) different, but there are trends in the data.  Jess Maher is the opposite of most of what you…

Hello Cholangiocarcinoma Family!  I write to bid you welcome to the blog and to provide a brief introduction.  After some time under the watchful eye of multiple volunteers and leaders from the Foundation, the blog is returning to a single owner model.  This isn’t to say you won’t hear from a variety of voices, but…

Palliative Care Podcast Palliative care should be implemented at the beginning of any serious or life-limiting diagnosis. It restores control of decisions to the individual. Palliative care practitioners work with individuals to control symptoms related to the illness, or the treatment. This includes pain, nausea/vomiting, appetite and taste changes, nutrition, etc. With any diagnosis that…

From our friends at CASCAP … CASCAP and together with the Cholangiocarcinoma Foundation of Thailand hosted a meeting with Prof. John Bridgewater University of London, Stacie Lindsey , President, Cholangiocarcinoma Foundation USA, Prof. Milind Javle M.D., Tenure Track, Department of Gastrointestinal (GI) Medical Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer…

Lisa Layton was told she had about a year to live in 2013 Read the whole story here.

Hello! My name is Patty Corcoran, and I am 51 years old. In late February 2011, I was diagnosed with intra-hepatic cholangiocarcinoma. Since then, I have received numerous chemotherapy medications, undergone three rounds of radiation, and even had a 15 month break from all treatment because I was doing so well. I have participated in…

Meet Danny van Brenk, age 34 who lives with his wife and two children Floris (5) and Isabelle (2) in Heukelum, a small town in the Netherlands. I was diagnosed February 2014 with intrahepatic cholangiocarcinoma. Doctors found tumors in 70% in my liver and I have lung metastases. I was told by the doctors in the Netherlands that there…

It has been awhile since I last wrote. My apologies. I have good intentions but then I get home from work and sometimes the thought of starring at the screen doesn’t sound so fun. However, I feel this is an important topic, chemo. I asked my trusty group of cholangio friends the following questions: What’s…

Cancer is a scary word. Cholangiocarcinoma is an even scarier word. What makes it better is finding other people affected by Cholangiocarcinoma. It’s no easy feat, I know. It’s a small community with only 2-3,00 people diagnosed each year in the United States. The more people you connect with the better you feel. At least…

Awhile ago I asked a group of people and not just ordinary people but cholangiocarcinoma fighters, what’s one piece of advice you’d give about anything related to Cholangiocarcinoma? Below are their exact responses but first my piece of advice is; DON’T LISTEN TO THE STATISTICS! “Perfect advice….6 months…to what…Perfect my karaoke voice and hip shake” “Go…

I was asked by the Foundation to share this story. I was more than happy to. It’s an incredible story and full of inspiration. I have talked to many people who have been told they are/were unable to have a resection. I know some of the those people endured months of chemo and radiation and…

On August 4, 2015, I celebrated my one year anniversary of being “cancer free” or NED (no evidence of disease) as my doctor says. It was an important day for me. More than anyone could truly understand. I decided on that day because it was when I had my surgery and since I had clear…

I have re-written the first sentence of post three times now. Why is it so hard to get what’s in my head down to my fingers and to the keyboard? *sigh* The week of August 4, 2014 to August 11, 2014, is a week I often relive. Have you ever woken up in the middle…

Here I am staring at a blank screen wondering what to type or where to start. Let’s start simple. My name is Sarah and I’m 31 years old. I am a daughter, mother, wife, sister, aunt, cousin, granddaughter, niece, daughter-in-law, sister-in-law, co-worker, and friend. Oh wait! You can add Cholangiocarcinoma warrior and/or survivor. My goal is to…

Long-distance runner Bill Merriam’s diagnosis of cholangiocarcinoma never slowed him down. Bill is featured in the premiere issue of Beating Cancer, a new online magazine for those who want to “kick cancer in the teeth.” Read this article and view his video message to you.   Click here to view our webchat.

An Important FREE Webinar: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobilliary Neoplasia Biorepository” When: Monday, July 14, 2014 4:00-5:00 PM (EST) Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN Purpose: Educate patients, supporters and caregivers to understand how Mayo Clinic is using the information and bio-specimens provided to improve care all for…

For those of you in the Sonoma, CA area, please consider attending “The 2014 Sonoma Bili Project Experience” on August 2nd hosted by The Bili Project Foundation.  The event hosted by Cedric the Entertainer includes dinner, live and silent auctions, and celebrity golf foursomes.  Proceeds benefit the UCSF Hepatobiliary Tissue Bank.  For more information, contact…

Cholangiocarcinoma patient, Valarie Spiser–Albert beat the odds with her positive attitude Three years ago, Valarie Spiser-Albert was diagnosed with cholangiocarcinoma.  She was told she had 6-8 months to live but her with her positive attitude, she beat the odds! Check out her story and video. Thanks for KSAT TV for sharing this inspirational story. http://www.ksat.com/news/cancer-patient-says-she-beat-odds-with-positive-attitude/25478826

                   Forty years after becoming a father for the first time, six children and thirteen grandchildren later, the question has to be; how has my life been changed through all these years in the role of dad and grandpa?  The simple answer…I can’t possibly fathom how different…