The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements.  Contributors like patients Sarah Bennett and Cait Telaak share news and personal anecdotes, and the blog also serves as a resource for new patients to familiarize themselves with the Foundation.  Keep an eye out for new posts as together we explore the world of Cholangiocarcinoma and the tireless work towards a cure!

Sneak Peek at the New Discussion Boards – the Foundation’s Hidden Gem

The Foundation’s discussion boards have long been a gathering place for patients and caregivers to share information and offer support.  When it was first created ten years ago, the discussion board corner of the cholangiocarcinoma.org site was on par with other similar forums, but as ten years passed and technology advanced, the decision was made to give the boards a face-lift.  Spearheaded by the Foundation’s very own Rick Pollock, the new site is sleek, mobile-friendly, and packed full of features for users to enjoy. Before we jump in to some of the excellent changes, it might be a fun exercise to take a look back at the boards through the years and learn a little about the recent path to improvement.  As of this writing,... read more

My Name’s Cait and I’m Here to Blog

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 the hope is to bring you consistent content every other week in a familiar format.  For this my inaugural post, I wanted to share some thoughts on how you will see things organized in the future and give a little personal history. The evening of November 24th, 2015, after only a little over 24 hours of knowing ‘something’ was wrong, I was diagnosed with intrahepatic cholangiocarcinoma.  I was 28... read more

Knock Out Cancer Event

Hi! Just getting back to you about our first fundraising event that was held on July 22- Knock Out Cancer. We had a great turnout with 100+ people, raising over $5,000! We created t-shirts and cups for this event that were able to be purchased, along with about 35 donated baskets that we raffled off. In the end, we have raised a total of $5,850 from this event and we will be donating it in full to The Cholangiocarcinoma Foundation! Although this was just the first year, we have even bigger goals for the next few years to come. This foundation hits very close to home with us so we are more than supportive of everything that you all do! I am going to... read more

Step inside the World’s Newest Cholangiocarcinoma Research Lab – Saha Laboratory

Step inside the World’s Newest Cholangiocarcinoma Research Lab – Saha Laboratory Principal Investigator: Supriya K Saha, MD, PhD Assistant Member, Fred Hutchinson Cancer Research Center Human Biology & Clinical Research Divisions Assistant Professor, University of Washington Medical Center Department of Medicine, Division of Oncology Location: Fred Hutchinson Cancer Research Center, Seattle, Washington Website: https://research.fhcrc.org/saha/en.html Established: 2016 Researchers: 2 postdoctoral fellows, 1 laboratory manager Goal: Our laboratory seeks to identify and characterize new treatment strategies for cholangiocarcinoma, and to translate our laboratory findings into innovative clinic trials that improve the lives of our patients. Dr. Saha’s work on cholangiocarcinoma has been recognized by the National Institutes of Health (NIH) and published in major scientific journals, including Nature. He was also the recipient of a $60,000... read more

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
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