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 years of study and a certain brilliance to master. A cancer diagnosis raises the stakes, though, and oftentimes either a patient or a member of...

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 one clever attendee, whose name I did not catch, recommended signing up for Google Alerts. Google Alerts and similar services use powerful search technologies to...

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 for our cancer. Genetics (testing the individual tumors) vs. location of the tumor, makes it possible for the first time for effective treatments of our...

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 to make the most of their situation.  I picture them huddled in little cell houses harassed by neighbors who want them evicted and an HOA...

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 almost hour and a half chat, I could feel her energy through the phone despite half a world of distance between us and a combative...

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 week’s patient, Andy Tebbutt, was known to me through our Warrior Facebook group.  We had not interacted before one on one, but I was aware...

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 back suggestive of possible diabetes.  He was prescribed metformin and told to come back in three months.  Later, when his blood work didn’t indicate a...

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).  Radiation of the liver specifically can be tricky given movement anything around the diaphragm undergoes during respiration.  When we breathe in, the liver shifts down...

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 Generally speaking, when a patient is first diagnosed with cholangiocarcinoma, personal research and introductory medical appointments hone in on chemotherapy and surgery, the current cholangiocarcinoma...

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.  She had been asymptomatic for any liver trouble, and when the doctor shared with little urgency that spots had shown up on her liver, Jess...

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 as little stress as possible. 1.  Be choosey of your decorations: Regardless the holiday, there’s a good chance your home will be decked and your...

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 swapping out the diseased organ for a new one.  2. Those closer to cholangiocarcinoma treatment cite the litany of challenges patients face when pursuing transplant,...

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 ASCO annual meeting in June, and once she had approval to add some bones to the thought, she went to work recruiting a small team. ...

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 that in Chicago. The Foundation has benefited from runner participation in the past, and often long distance runners use these races to fund raise for...

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, there are 13,608 topics, 95,516 posts, and 4,225 registered users.  In fact, as I type this on a beautiful Sunday afternoon, there are 16 guests...
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