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!

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

Radiation Part II

And we’re back!  I meant to have this up last week, but between the holidays and family in town, that ambition crashed and burned in merry, yuletide fashion.  We left off last post with a promise of a deeper dive into what a radiation treatment, specifically stereotactic radiation, might look like from beginning to end.  With that in mind, we’ll return to the brilliant Dr. Stephans to take us through the ins and outs of a hypothetical treatment. Preparation Part I – Planning Session According to Dr. Stephans, the first medical step in preparing to administer SBRT would be ‘simulation’, a process by which the team walks through the procedure with the patient including time on the table to practice (more on that below). ... read more

Treatment Modalities: Radiation

I began the last treatment modality post with a tease about controversial cholangiocarcinoma treatments.  Liver transplant is arguably one of the more misunderstood modalities, but radiation just might get the worst rap.  When many lay people hear “radiation”, we think scorched earth.  Radiation historically represents one of the most aggressive treatments and one that by reputation does terrible damage.  The modern radiation landscape, however, presents some of the most exciting treatment options including applications with curative intent. To help us explore this modality and its potential, I met with Dr. Kevin Stephans at the Cleveland Clinic’s Taussig Cancer Center and asked him to help dispel treatment myths and catch us up on the modern landscape of radiation. Several Decades Make a World of Difference... read more

Persistence – Jess Maher’s Story

Imagine for a second that there is a checklist that describes the ‘typical’ cholangiocarcinoma patient.  An impossible task, I know, as we are all so significantly (or perhaps maddeningly if you’re the doctor trying to fix us) different, but there are trends in the data.  Jess Maher is the opposite of most of what you would expect.  A female in her early thirties at diagnosis, she will mark 5 years since the discovery of her cancer on December 13th, she is a survivor of 3 recurrences, and earlier this year she was the recipient of a new liver.  Not much of Jess’s story fits the cholangiocarcinoma mold. Jess’s medical sojourn began in November of 2012, when she received a CT scan for an unrelated event. ... read more

Top Ten Tips for an Easier Holiday Season

It’s no surprise that the holidays come with a mixed bag of emotions and experiences.  In the best of circumstances this time of year, while joyful, carries a fair amount of stress, but when cancer enters the equation, many of the already complex feelings are magnified.  Sometimes the patient is the one who typically hosts the holiday and is totally overwhelmed by even the thought of having a house full of people.  Other times it might be a caregiver who pales at the thought of keeping track of 10 grandkids while trying to ensure a spouse is comfortable.  While there is no solve-all for holiday challenges, below are ten tips to consider in making it through this holiday season with as much joy and... read more

Treatment Modalities: Liver Transplant

This post marks the first in a series reviewing different cholangiocarcinoma treatment modalities.  Moving forward, one post each month will look at the present state of a common treatment including an interview with a leading expert on the subject.  Please use the comments to share your feedback on information you would like to see in future posts and any treatments or doctors you would like to see us highlight. If you want to start a spirited debate in the cholangiocarcinoma community, one of your best bets would be to bring up liver transplantation as a treatment for our disease.  Typically, responses come back in one of three buckets.  1. Individuals who aren’t close to cancer treatment tend to voice excitement at the possibility of... read more

C.A.R.E. Team Launches in Chicago

Melinda Bachini is a familiar face within the Foundation.  An 8-year survivor, she is on the front line of introducing the newly diagnosed to the Foundation’s services and helping them to navigate their new reality.  In addition to her work with the Foundation, Melinda sits on several national committees such as the NCI Patient Advocate Steering Committee.  When Marion Schwartz retired as the Chief Advocacy Officer over the summer after over 10 years of service, Stacie Lindsey recognized Melinda’s talents and asked her to fill the void of Marion’s absence. With a mountain of work to be done and limited resources, Melinda quickly began to brainstorm ways to mobilize the existing volunteer population.  She presented the kernel of an idea to Stacie at the... read more

Team CCF Takes on the Chicago Marathon

Assuming you haven’t tackled one before, have you ever really thought about what it takes to run a marathon?  If a runner maintains a 12-minute mile pace (essentially a jog) and does not take walk breaks, it would take them 5 hours and 14 minutes to complete the 26.2-mile course.  For some perspective, if you’ve ever watched the BBC’s 6-part mini-series of Pride and Prejudice, take the time you sit on the couch watching each episode back to back and imagine that instead of falling in love with Colin Firth’s Mr. Darcy, you’re running.  Without stopping.  For 26.2 miles. Is anyone else insanely impressed by that?  I know I am, and on this past Sunday, we had 8 runners for Team CCF do just... read more

Event in memory of Kathy Plouff

Event in memory of Kathy Plouff I am so happy to update you to tell you the Fundraiser we had in memory of my Mom on what would have been her 52nd birthday was a HUGE success,I believe that we raised a little over $2,000!   We are so grateful for our generous friends and family that came out to support the foundation, which means so much to my sister, father, and I. I have attached some pictures from the event!   We are again so thankful and blessed to be able to contribute to the foundation. It was a beautiful tribute to our mother and hopefully shined a light on the value of the CCF! Thanks!   Best,  Alie... read more

ERCP or PTC Survey – We Need Your Help

CCF is partnering with the Medical University of South Carolina and leading medical institutions to conduct a study of whether ERCP or PTC should be used as the first procedure for eliminating jaundice for patients with cholangiocarcinoma, while also taking into account patient attitudes, values and expectations. Endoscopic Retrograde CholangioPancreatography (ERCP) – uses a flexible scope passed through the mouth to the bile duct Percutaneous Transhepatic Cholangiography (PTC) – places a catheter through the skin into the bile duct Both procedures have been widely used for many years for relieving jaundice and its related symptoms, but few studies have compared their merits and disadvantages. This research has the potential to not only measure the effectiveness of the procedures, but to also ensure that all stakeholders can be fully informed about the critical choice between having... read more
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