About the Author

I am a 31-year old mother of a two-year-old son from Roxbury Township, NJ.  My name is Sarah Bennett and I  was diagnosed with cholangiocarcinoma on July 9, 2014 after a visit to the emergency room with severe back and right abdominal pain. For the longest time I thought I was the only one with type of cancer. I think it’s important to be able to connect to others so I am sharing my story through the CCF blog.  I hope that you will also join the conversation.

Cancer Moonshot

National Cancer MoonShot 2020 New Hope for Rare Cancers Before July of 1969, our nation thought that landing on the moon would be an impossible feat, only imaginable in our wildest dreams. When Neil Armstrong and Buzz Aldrin walked on the moon, the word “impossible” was shattered when Armstrong said, “That’s one small step for man, one giant leap for mankind.” In January 2016, our nation took one small step in the right direction towards a cure for cancer. When President Obama gave his final State of the Union, he announced that Vice President Joe Biden would be heading a vital initiative called the National Cancer MoonShot 2020. Having lost his son, Beau, to brain cancer last May, Biden took the reins on this... read more

Charlie Chanaratsopon, CEO and Founder of “Charming Charlie” Cares

The abbreviation for cholangiocarcinoma, a rare form of liver cancer is “CC” however, one “CC” patient in Oregon prefers to think of it as “Charming Charlie.” Charming Charlie stores are filled with colorful clothing, beautiful jewelry, amazing accessories, delightful employees and enthusiastic shoppers. — Lisa Layton SALT LAKE CITY, UTAH, UNITED STATES, September 13, 2016 /EINPresswire.com/ — Lisa Layton has a diagnosis of stage IV intrahepatic cholangiocarcinoma. She was first introduced to the brand “Charming Charlie” while a patient at Oregon Health Sciences University in Portland, Oregon. While undergoing treatment in the oncology unit, Lisa received a darling “Charming Charlie” hat with an adorable pom-pom. She proudly wore the donated hat and garnered many compliments. Lisa then visited her local “Charming Charlie” store in... read more

Campaign for the CURE: Meet Kris Jacobs

My name is Kris and my journey began in Feb. 2011 when my back started hurting. The band of pain from my back to my chest was excruciating. I was vomiting from the pain. It eventually lessened a bit. I didn’t want to go to the hospital. On Monday, I went to see my Dr. and was sent for an ultrasound. It was just gallstones. Wrong! After a CT scan we knew there was a mass in my liver. Lots of tests, two oncologists (my 1st new word) later, and a biopsy led to hearing my 2nd new word… CHOLANGIOCARCINOMA. I looked up that word and got really scared. In 2011 the chances were about 7% that I would live two years. It was one of the worst nights of my life. I was 47, had a pretty serious boyfriend, was the happiest... read more

Campaign for the CURE – Meet Sarah and her husband Andy

Sarah Pieh was born in Adrian, Michigan on New Year’s Eve 1976. From a young age Sarah had a distinctive love of reading, traveling, and exploring new things. After graduating Cum Laude from Northwestern University in 1999, Sarah worked in Chicago for McMaster-Carr Industrial Supply before moving to Hawaii in 2001. There she met her devoted husband Andy Macias, a naval officer stationed in Honolulu. Together, Andy and Sarah enjoyed an active military lifestyle living in Maryland, Japan, California, Brazil, and Miami. Sarah was driven to expand her personal boundaries. Sarah joined the U.S. State Department in 2008. She successfully completed a rigorous training program, and in 2009 earned her qualification as both a federal law enforcement officer and a Special Agent with the... read more

Campaign for the CURE – Patty Corcoran

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 two clinical trials, including the one I am on currently. In March 2015, I enrolled in a Phase II trial for the Novartis BGJ398 at MD Anderson. I experienced few ill effects, aside from diet restrictions and losing a few toenails, and the drug kept my cancer stable for about eight months. At that point, my doctor and I decided it would be a good time for me to... read more

Campaign for the CURE – Meet Danny van Brenk

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 was no treatment left for me and I would only have a few more months to live. Clinical trials for cholangiocarcinoma weren’t available in the Netherlands at that time so we started searching for trials in Europe. We went to Belgium and Germany but there were no options for cholangiocarcinoma treatment, not even in a trial. Via my Dutch surgeon I heard about a treatment in New York at Memorial Sloan Kettering Cancer Center. It’s called the HAI-Pump. The pump directly delivers... read more

Photos from ASCO 2016

“Collective Wisdom” is the theme for this year’s ASCO’s Annual Meeting in Chicago. Our attending team includes Melinda, Barbara, Jason, Andie, Kathi, Donna, Stacie and Marion.  Melinda and Barbara staffed the exhibit while the rest of our team were dispersed throughout the conference halls attending sessions or connecting with the various biopharma industry, researchers, physicians and advocates. In the past 5 years, cancer immunotherapy has captured the attention of the medical community and the general public; however scientists are questioning the challenges of successfully integrating immune-oncology in cancer care. We know that  immunotherapy research is still in its infancy.   Many scientists and doctors around the world are studying new ways to use immunotherapy to treat cancer. There is not a clear understanding as to why some patients... read more

Chemo 101

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 some advice you give someone just starting chemo and/or radiation? Or any other procedure associated with this cancer. What are your thoughts or feelings on chemo ending? Whether it was because your doctor didn’t feel the need for it anymore because NED. Or you needed to stop and give your body a break. Or you personally decided to stop chemo and why? I ask because there are so many... read more

Get connected

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 for me that’s how it is. You can start through The Cholangiocarcinoma Foundation message boards. Last October, about two months after my resection I heard about Immerman Angels. Through them I was connected to my mentor, who has turned out to be a very dear and close friend.  Fast forward two months later to December when I participated in The Cholangiocarcinoma Foundation Giving Tuesday contest. I entered my photo in the... read more

Don’t listen to the statistics.

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 to doctors who specialize in this rare cancer. Don’t hesitate to get second opinions on everything.” “In this case sometimes everyone is not created equal, sometimes it depends on your body how reacts to treatments . Or what kind of cancer tumor you have. But remember we are all here for each other.” “Don’t wait for tomorrow, do it today.” “Listen to yourself and how you feel. Fight for... read more

A Story of Hope

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 were eventually able to have a resection. I hope Matt’s story gives others hope as well. “Life is an obstacle course for this very brave couple. Meet Matt (36) and Lauren O’Quinn from McDonough, GA. Matt’s journey began in November 2010.  Prior to this time, Matt O’Quinn was a healthy 30 year-old with no medical issues.  One day, Matt’s wife Lauren noticed the whites of his eyes formed a yellow... read more

Advocacy, Public Policy and the Cholangiocarcinoma Foundation

Influencing health care in the legislative arena assuring for an effective health care system is of great interest to the Cholangiocarcinoma Foundation and the patient community at large. We recognize that many issues are too big or complex to be easily resolved by a single organization and that it requires the knowledge of organized groups. In order to ensure that rare disease patients are heard in the State and Federal Government, advocates must make contact with their respective legislative and Federal constituents. Marion Schwartz, Chief Advocacy Officer, joined a Rare Disease Legislative Advocate meeting with Senator Barbara Boxer’s Office on August 13th. The focus was the 21st Century Cures Act, which passed in Congress and now goes to the Senate for the not yet... read more

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