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.

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

Another Fundraiser Spotlight

A great email we just received from Karen… Our family held a Family Reunion two weeks ago in Richmond, Virginia. During the reunion, we had a Silent Auction to raise money to donate to the Cholangiocarcinoma Foundation in honor our Mother who passed away from cholangiocarcinoma on 12/10/2011. We raised $1,079.00 amazingly enough! Thank you for your help, and work to find a cure for cholangiocarcinoma. Sincerely, Karen D. Hargrove Thanks Karen!  If you would like to host an event, please check out these tips and... read more

1 year later and treatment woes.

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 margins and no lymph node involvement that’s what I went with. Not when I finished chemo, which was five months ago. When I look back to the past year, I can’t help but think about ALL of the ups and downs. Each holiday I obsessively took pictures for fear that it might be my last one. I wanted each and every holiday and birthday to be celebrated and the... read more

Research Grant Opportunity in Cholangiocarcinoma Young Investigator Award (YIA)

The Conquer Cancer Foundation of ASCO is now accepting applications for the 2016 Young Investigator Award (YIA). The YIA is a one-year, $50,000 grant that provides research funding to promising physicians who are planning an investigative career in clinical oncology. The award is targeted towards physicians in their final years of oncology subspecialty training. For 2016, The Cholangiocarcinoma Foundation, CCF, has funding for early-career researchers who are interested in cholangiocarcinoma research.   Apply Now The YIA is designed to encourage investigators early in their careers by promoting the development and conduct of high-quality cancer research. Potential topics must have a clinical research focus. Research proposals in all oncology subspecialties and emerging disciplines are considered for funding. Areas of interest include, but are not limited to,... read more

Did that just happen?

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 of the night or in the morning, groggy and out of it wondering if what you just experienced was real or not? Have you ever woken up and had a hard time adjusting your eyes and everything was blurry? Now imagine yourself waking up, in a dimly lit room and not knowing where you were. Imagine your eyes being so swollen that you could barely see. Imagine seeing blurs of people... read more

Webinar: Using “Spacers” for Safer Delivery of High Dose Radiation Therapy

Webinar: Using “Spacers” for Safer Delivery of High Dose Radiation Therapy High dose radiation therapy is effective in the treatment of liver tumors. However, the greatest limitation in the use of radiation is not the liver itself, but rather adjacent organs like the stomach or intestines, which do not tolerate high doses of radiation therapy. The use of laparoscopically-placed spacers can safely provide critical distance between a liver tumor and these sensitive organs and allow for therapeutic treatment of liver tumors, expanding the number of patients who can be offered potentially curative high dose radiation therapy. Download the Slides Dr. Theodore Hong Director of Gastrointestinal Radiation Oncology at Massachusetts General Hospital and Associate Professor of Radiation Oncology at Harvard Medical School Dr. Theodore Hong... read more

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