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!

2019 Annual Conference Videos

All of the presentations at our 2019 Annual Conference are online and waiting to be viewed! Visit our Conference in Review page for photos, a recap video and videos from many of the presentations, or if you prefer, visit our YouTube Channel, where we have all of the Conference Videos arranged into a... read more

The 2019 Annual Conference T-Shirt Design Contest

CCF is excited to announce our Annual Conference t-shirt logo contest. The logos will be printed on a white sport t-shirt with green 3/4 sleeves. Contest Rules Use this entry form to submit your logo design Limit design to a maximum of 2 colors Limit design to no larger than 10 inches square 5 designs will be posted on our Facebook page for voting. The winning design will be the logo with the most “likes” Submission deadline is Sunday, September 30th Questions? Email jordan.giles@cholangiocarcinoma.org   Name* First Last What is your relationship with cholangiocarcinoma?Patient (personally diagnosed)CaregiverFriend or Relative of PatientOtherAddress Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian... read more

Thoughts and Memories of Marion Schwartz

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 work and considered you friends and colleagues. Today, at CCF we will be thinking of Marion, all she accomplished and all those she personally shepherded through life with compassion and great tenderness. She had a wonderful gift that she shared with all of us. She was and will continue to be an enormous blessing to our community. Love to all, Stacie C. Lindsey President & Founder Cholangiocarcinoma Foundation We... read more

Mouse Models and Avatars

According to the U.S. Bureau of Labor Statistics, in 2008, healthcare positions accounted for 12% of all private-sector jobs, a number that has consistently been on the rise.(1) Included in this data were such vocations as pharmacists, physical therapists, dental hygienists, medical assistants, home health aides, etc. Many non-M.D. professionals within this population have had some organized biology education, however, as with many jobs, the farther we get from our schooling, the less we retain. Even for those who have had formal, scientific education, many cancer research mechanisms are only vaguely familiar. For the rest of us, the science ascends to peaks that rise beyond our comprehension, and there typically isn’t incentive for lay people to immerse themselves in a discipline that takes many... read more

How to Sign Up for Google Alerts

My recent(ish) surgery knocked me down a little more than expected, so I won’t be tackling the complex topic of mouse models/mouse avatars (with a detour into personalized medicine) until my next post in two weeks.  In the meantime, I wanted to share a neat trick a fellow attendee introduced me to at this year’s conference. For many of us, keeping track of the scientific advancements around cholangiocarcinoma is a full time job.  We mine the annals of the internet searching for anything relevant to our disease and our specific presentation, an overwhelming task even with undivided attention, much less with life’s many distractions.  This was a topic of conversation in one of the morning EPIC (Engaging Patients in Cholangiocarcinoma) sessions at the conference, and... read more

Love and Hope

Reading this blog you get a lot of one person’s perspective, but so many lives have been impacted by cholangiocarcinoma.  When I asked fellow patients to give their perspectives from the conference, Tom, Heidi, Catherine, and Lois all graciously offered to share their thoughts.  If any readers didn’t share but would like to, please feel free to do so in the comments!   Since My diagnosis in 2007, dramatic strides have been made in fighting cholangiocarcinoma, but we are far from done. We need to make remission the norm, not the exception. Cholangiocarcinoma is notoriously difficult to treat because it is aggressive and progresses quickly. Every cancer patient deserves a fair fight. The Cholangiocarcinoma Foundation is leading the way towards achieving a fair fight... read more

Patients, Physicians, Progress

Science has never been my forte.  That’s not to say it disinterests me, but it never held my attention like the humanities.  For someone who has no natural talent for biology, however, I spend an inordinate amount of time thinking about cells.  I ponder the cells dividing in my own system, somewhat dispassionately considering the nature of the damaged ones who first slipped through the cracks of my immune system.  I anthropomorphize the pioneer cholangiocarcinoma cell that decided to depart from the safety of his tight-knit hepatocellular community to break off into my bloodstream and take up residence in my lungs. I think of those cells not as invaders, but instead as settlers who didn’t ask to exist and are now doing their best... read more

Empowerment – Helen Scott’s Story

It’s natural for cancer patients to, at some point in their journey, indulge their curiosity.  When you are diagnosed with a disease as rare as cholangiocarcinoma, one of the first questions that comes to mind is: why?  A person wonders if maybe they have a genetic predisposition, or maybe they’ve unknowingly encountered carcinogens that altered something in their system at a cellular level.  Regardless the reason though, preventative attempts become less of a priority.  When cancer is present, the gears shift, and we head in a new direction. For Helen Scott, a healthy, happy, young mother, there was no obvious cause for her disease.  She doesn’t dwell on that fact though, it’s what she chose after that is both interesting and inspiring.  During our... read more

Even Keel – Andy Tebbutt’s Story

I can’t speak for other rare cancer populations, but the cholangiocarcinoma community is fairly tight knit.  In some ways, we are like members of the same college class after graduation.  We’re spread all over the globe, but when we talk it’s with the familiarity and an intimacy of old friends, and we even occasionally gather for pseudo reunions.  Many of us chat weekly and even daily, and through forums like the discussion boards on this site and Facebook support groups, we get to know each other despite the vast space between us. Our next two patient features come to us from different countries and even different hemispheres.  One remarkable cholangiocarcinoma reality, however, is that an instantaneous comradery seems to form that transcends distance.  This... read more

Roller Coaster – Barry Cohen’s Story

Written by Cait with edits of style and flair by Barry Cohen Depending on your perspective, roller coaster might have a negative connotation.  For Barry Cohen though, it doesn’t, and that’s in no small part because he chooses for it to be positive.  Speaking with him for this feature was both entertaining and informative, and I’m delighted to share his story here.  We’ll start with a recap of his path so far then end with what he referred to as ‘nuggets’ that he imparted throughout our chat. Barry’s Story As is not uncommon with our disease, then 50 year-old Barry was asymptomatic before his diagnosis.  In October, 2014 he went to see his primary care physician for a routine physical when the bloodwork came... read more
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