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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.


Meet Professor Juan W. Valle’s Research Team

Meet Professor Juan W. Valle's Research Team Principal Investigator: Juan W Valle Professor in Medical Oncology; Institute of Cancer Sciences, University of Manchester, Manchester Academic Health Sciences Centre (MAHSC), Manchester. Consultant in Department of Medical Oncology, The Christie NHS Foundation Trust, Wilmslow Road, Manchester. Location: The Christie NHS Foundation Trust (Manchester, United Kingdom) Website: http://www.christie.nhs.uk/ Established: 2000 Researchers: 4 Senior Staff in medical oncology; 2 PhD students; 2 research fellows; 4 research nurses, 1 nurse clinician, 1 clinical nurse specialist, a team of clinical trial coordinators, a project manager, a dietitian and various students Goal: Professor Valle’s team is focused on clinical and translational research in cholangiocarcinoma and other Hepato-Pancreato-Biliary tumours. They aim to understand clinical characteristics of patients with cholangiocarcinoma and develop new... read more

Step inside The Kwong Lab

Step inside The Kwong Lab Principal Investigator: Lawrence Kwong, PhD, Assistant Professor of Translational Molecular Pathology Location: University of Texas MD Anderson Cancer Center Website: https://www.mdanderson.org/research/departments-labs-institutes/labs/kwong-laboratory.html Established: 2015 Researchers: 4 postdoctoral fellows, technicians, and students; 2 visiting students Message to Patients Dr. Kwong would like to stress that patients are the number one focus at MD Anderson. Therefore, as a researcher, it is vitally important that our laboratory maintain human contact with patients through communications, attending conferences where patients and survivors are present, and keeping in close contact with doctors who specialize in cholangiocarcinoma. Goal: The laboratory is establishing new cholangiocarcinoma mouse models and cell lines to test drug combinations and understand how DNA is affected by this cancer. Greatest Achievement: Dr. Kwong considers... read more

Take a step into the Bardeesy Lab

Location Massachusetts General Hospital (MGH) Website http://www.bardeesylab.com Established 2005 Principal Investigator Nabeel Bardeesy, PhD Associate Professor of Medicine at Harvard Medical School Faculty at the MGH Center for Cancer Research Affiliated Faculty at the MGH Center for Regenerative Medicine Researchers 12 postdoctoral fellows, technicians, and students Studies The laboratory has worked to develop experimental models to better understand cholangiocarcinoma and predict potential new treatment approaches Message to Patients As a CCF Scientific Advisory Board Member and cholangiocarcinoma researcher, Dr. Bardeesy would like to convey the message to patients that there is a rapidly growing community of scientists who are focusing on this cancer. Significant advances have been made in identifying and understanding the mutations that cause this cancer. This information has led to clinical... read more

Palliative Care Podcast

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 is serious, a provider team should be established to care for the individual holistically. This may include a medical oncologist, surgical oncologist, radiation oncologist, palliative care physician/nurse practitioner, social worker, nutritionist, clinical nurse navigator, and others. The following podcast is an excellent explanation of palliative care/symptom management, and is meant to help explain how individuals and caregivers can care for themselves throughout their... read more

Cholangiocarcinoma Patients with a Specific Genetic Biomarker Now have a New Treatment Option

FDA grants approval to Merk & Co. for Keytruda (pembrolizumab) “The hope is that advanced genetic information will one day be able to identify which patients are most likely to benefit from a specific treatment.” — Marion Schwartz SALT LAKE CITY, UTAH, USA, June 14, 2017 /EINPresswire.com/ — The U.S. Food and Drug Administration has granted approval to Merck & Co. for the first cancer drug based on a patients’ individual genetic characteristics, regardless of where in the body the disease started. Keytruda (pembrolizumab) is for patients with solid tumors identified as having a biomarker called microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR). This genetic defect activates cells to search out and destroy the cancer. “This is an important first for the cancer... read more

CCF meets with CASCAP and The Cholangiocarcinoma Foundation of Thailand

CCF meets with CASCAP and The Cholangiocarcinoma Foundation of Thailand 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 Center, Houston, TX . Vice Chair of the Cholangiocarcinoma Foundation USA, Asst. Prof. Dr. Yun Shin Chun M.D., Department of Surgical Oncology, Division of Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX. Dr. Mitesh J. Borad, M.D. Mayo Clinic, Department of Oncology, Phoenix, Arizona, Sean Tuberville Board member, Cholangiocarcinoma Foundation USA., and Patty Maxin, Patient Advocate,... read more

Andrea’s Night 2017

Andrea’s Night “On the 50 Yard Line” was held on January 14, 2017 in Evansville, IN, by Dan Fuquay and Andrea Remembered in memory of Andrea Fuquay.  This annual event was once again a huge success with a sold-out crowd of 500 attendees!  The fundraiser cleared $110,000 for distribution to various charities including the Cholangiocarcinoma Foundation, which received $30,000. Thank... read more

Five Biopharma Companies Headline Industry Night at Cholangiocarcinoma Foundation Annual Conference

ArQule, ASLAN Pharmaceuticals, Delcath Systems, Inc, InnoPharmax and Leap Therapeutics to Present Clinical Trial Concepts to International Research Network Truly, the best GI cancer meeting where the best science, most collaboration and meeting of the minds occurs year after year.” — Renuka Iyer, MD Roswell Park Cancer Institute SALT LAKE CITY, UTAH, UNITED STATES, January 19, 2017 /EINPresswire.com/ — The Cholangiocarcinoma Foundation (CCF) announced today that five biopharmaceutical companies have been selected to present their clinical trial concepts at the upcoming Annual Conference in Salt Lake City, Utah. During the Industry Night event, representatives from ArQule, ASLAN Pharmaceuticals, Delcath Systems, Inc, InnoPharmax and Leap Therapeutics will present their clinical trial concepts to the International Cholangiocarcinoma Research Network (ICRN) which represents more than 30 investigators... read more

Saha Laboratory Opens Doors to Study Highly Lethal Cancer of the Bile Ducts

Saha Laboratory Opens Doors to Study Highly Lethal Cancer of the Bile Ducts Cholangiocarcinoma Foundation Sees Great Promise in New Research Lab [SALT LAKE CITY, Utah (November 9, 2016) With the opening of the Saha Laboratory for Liver Cancer Translational Research, a giant step forward has been made in the study of cholangiocarcinoma, a highly lethal malignancy of the liver bile ducts. Supryia Saha, MD PhD, has joined world-class scientists in Seattle at the Fred Hutch Cancer Research Center – the home of three Nobel laureates – to revolutionize prevention, detection and treatment for cholangiocarcinoma. Liver cancer is one of the fastest growing cancers in the United States and world-wide both in incidence and mortality. Intrahepatic cholangiocarcinoma (ICC) is the second most common sub-type... read more

Fall 2016 Newsletter

Fall 2016 Newsletter FROM OUR PRESIDENT This issue of the newsletter marks an exciting milestone for the Cholangiocarcinoma Foundation (CCF), as we are celebrating our tenth anniversary. As I think over the last 10 years, I can hardly believe where we started and where we are now. We’ve grown from a small group of concerned volunteers to a small group of employees and a sizeable group of volunteers. We’ve moved from covering the cost of stamps, the website and travel from our own pockets, to awarding over $1.2 million in research grants. We’ve moved from being casually recognized by pharma and biotech, to being asked for our input on new clinical trial concepts. We’ve advanced from pleading for a voice for our patients at... read more

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