Blog Post Archives - The Cholangiocarcinoma Foundation

An unspeakable loss has affected the cholangiocarcinoma world on Friday, January 10, 2020. Melinda Bachini, our beloved patient advocate, tragically lost her son, Skylar Evan Kiefer, during the second decade of his life. In typical Melinda fashion, even in the darkest hours, her focus was to ensure that Skylar’s organs would benefit others. Friends in…

CCF is excited to announce our 2020 Annual Conference t-shirt logo contest. The logo will be printed on a white short-sleeved t-shirt. Contest Rules Submit logo designs to submit@cholangiocarcinoma.org. Acceptable formats include high-resolution .jpg, .ai, .eps and .pdf. Limit design to a maximum of 2 colors. Limit design to no larger than 10 inches square.…

Is the secret to combating a “silent killer” hiding in our health data? That’s what we have been teaming with Komodo Health to find out. Intrahepatic Cholangiocarcinoma, or ICCA, is the second most common primary liver cancer in the world. Because its early symptoms often go unnoticed or can be attributed to other ailments, diagnosis…

Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from area clinicians highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion and Q&A around the…

During this time of year when we are counting our blessings and giving thanks, please consider joining the CCF Patient Registry and sharing your health history to help advance research for cholangiocarcinoma. By joining our registry, your un-identified health information will provide important data to researchers to better understand cholangiocarcinoma and help develop new treatment options. Adding your information…

Now it begins. Thanksgiving. Giving Thanks. Food, Family, Friends, Fun. Turkey, Traditions, Touchdowns, Travel. Tension?! I remember a little of what I think I learned about the “First Thanksgiving” as a child. The Pilgrims came from England on a ship. “If April showers bring May flowers, what do May flowers bring? PILGRIMS – Bazooka Joe”. …

“Giving is not just about making a donation. It is about making a difference.” Last year on Giving Tuesday, people came together on Facebook to raise over $125 million to support the causes they care about. Building on this incredible momentum, and to further amplify that generosity, this year on December 3rd, starting at 8:00…

About a month ago my dad got a Facebook message from Carlos, a good friend living in Guatemala. He mentioned that he was coming to the United States with his family soon and was asking about places he should visit in Utah. My dad recommended Zion National Park, Arches National Park and a few other…

The Mike Shane Memorial Fund helps reduce financial barriers for patients who need a second opinion on their initial diagnosis of cholangiocarcinoma*. Purview, a global healthcare technology company, created this fund in memory of Mike Shane, a longtime friend and supporter who passed away on April 28, 2019, after a year-long battle with cholangiocarcinoma. Mike…

On September 21, 2019 Heidi Rhea’s dream of having a successful and lively family friendly Oktoberfest celebration, in support of the Cholangiocarcinoma Foundation (CCF), came true. The 1,200 plus attendees surprised even Heidi herself. Heidi, a patient of cholangiocarcinoma, is also an active volunteer with CCF. She plays a crucial part in helping bring awareness…

CCF sponsored a half-day symposium at the University of Chicago last week. Here are some notes and impressions. It’s not complete, and perhaps I got some of it wrong. I’d appreciate comments and corrections. Stacie Lindsey outlined the history and mission of CCF. I can’t help but feel that her work and that of her…

TeamCCF had 18 runners participate in the 2019 Bank of America Chicago Marathon, Sunday, October 13th. This year’s team was the largest to date with men and women of all ages from 13 different states. Together the team raised an unprecedented $49,485. And they will continue to fundraise through the month of October. Runners participate,…

Written by Stephanie Zinis In May of 2018 our families’ lives were forever changed. A routine doctor visit led to an accidental discovery that my mom, Renee, had cholangiocarcinoma, a rare cancer affecting fewer than 40,000 per year. After my mom’s diagnosis we began researching and preparing for the future ahead. We came across many…

In a segment from this NBC’s Today Show, Karen Peterson discusses her experience with breast cancer. She has been an advocate for herself and others since her diagnosis. She talks about her genomic testing, being informed about her treatment options, as well as the importance of advocating for herself.

October 1 is Rare Cancer Day as proclaimed by the National Organization for Rare Disorders (NORD). The NORD website shares the goal is “To shine a light on the rare cancer community, a group of individuals who are often overlooked in the broader cancer community.” The President and Founder of the Cholangiocarcinoma Foundation (CCF) Stacie…

As the “instigator” who 11 years ago blissfully started getting mothers of active-duty Marines and eventually Marine vets to meet together to share experiences, information, and to just be with others “who get it”, I’m doing it again thanks to CCF. At the last annual conference, I met Caitlin Fortuna and her youngest daughter.…

Charles Graeber, The Breakthrough: Immunotherapy and the Race to Cure Cancer, Twelve, 2018. “Cancer kills millions of people every year and is one of humanity’s greatest health challenges. By stimulating the inherent ability of our immune system to attack tumor cells James Allison and Tasuku Honjo have established an entirely new principle for cancer therapy.…

“Cholangiocarcinoma sucks, it’s a tough, tough cancer. Being difficult to diagnose, often diagnosed in later stages, and having limited treatment options, we knew we wanted to see how we could maybe help change that for future CCA patients” explained Jan Meyer, a current cholangiocarcinoma (CCA) patient. Recently, the Cholangiocarcinoma Foundation had the opportunity to interview Jan…

Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from the University of Chicago’s hepatobiliary team highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion…

On August 12, the Cholangiocarcinoma Foundation announced a partnership with Ciitizen. This partnership is formed around the belief that you should have full access to your health data. Cholangiocarcinoma patients have immediate access to the Ciitizen platform, which enables you to gather your medical records and leverage this platform to control your health data. When…

Over three years ago I was diagnosed with an incurable cancer, at the age of just 39 when my 3 children were under the age of 5. Since then I have undertaken countless treatments including 30 chemotherapy cycles spanning 4 types, radiation, cyberknife, SRS, ablation, dendritic cell therapy, targeted drugs and immunotherapy, always with the…

Since 2015, the Foundation has awarded more than $1.9 million in funding for innovative, high-quality research. SALT LAKE CITY, UTAH, USA, August 6, 2019 — The Cholangiocarcinoma Foundation (CCF), a nonprofit organization funding novel research for bile duct cancer, has awarded the 5th cycle of its Research Fellowship Program. CCF is pleased to support 7 projects for…

A Cancer AGES us but isn’t aging what we long for?! B It BLINDS us to far away, future concerns. It brings us to a “near- sighted” living where we don’t miss the present. C Cancer gives us CAUSE – a reason to try treatments and trials for new therapies; not only for our own survival, but for those who follow…

This free webinar provided updates on the TAS 120 clinical trial and also served as a question and answer forum for patients and caregivers.

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…

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…

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…

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…

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…

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…

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…

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…

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. …

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…

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…

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…

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…

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…

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…

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…

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…

Click here to see an interview with Herb Lavery, the Organizer of the Strader Strong Triathlon.

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…

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.…

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…

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…

Our friends at Memorial Sloan Kettering have put together an excellent animation explaining Immunotherapy.

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…

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…

Lisa Layton was told she had about a year to live in 2013 Read the whole story here.

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…

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…

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…

National Cancer MoonShot 2020 New Hope for Rare Cancers Before July of 1969, our nation thought that landing on the moon would be an impossible feat, only imaginable in our wildest dreams. When Neil Armstrong and Buzz Aldrin walked on the moon, the word “impossible” was shattered when Armstrong said, “That’s one small step for…

The abbreviation for cholangiocarcinoma, a rare form of liver cancer is “CC” however, one “CC” patient in Oregon prefers to think of it as “Charming Charlie.” Charming Charlie stores are filled with colorful clothing, beautiful jewelry, amazing accessories, delightful employees and enthusiastic shoppers. — Lisa Layton SALT LAKE CITY, UTAH, UNITED STATES, September 13, 2016…

My name is Kris and my journey began in Feb. 2011 when my back started hurting. The band of pain from my back to my chest was excruciating. I was vomiting from the pain. It eventually lessened a bit. I didn’t want to go to the hospital. On Monday, I went to see my Dr. and was sent for an ultrasound. It was just gallstones. Wrong! After a CT scan we knew…

Sarah Pieh was born in Adrian, Michigan on New Year’s Eve 1976. From a young age Sarah had a distinctive love of reading, traveling, and exploring new things. After graduating Cum Laude from Northwestern University in 1999, Sarah worked in Chicago for McMaster-Carr Industrial Supply before moving to Hawaii in 2001. There she met her…

Hello! My name is Patty Corcoran, and I am 51 years old. In late February 2011, I was diagnosed with intra-hepatic cholangiocarcinoma. Since then, I have received numerous chemotherapy medications, undergone three rounds of radiation, and even had a 15 month break from all treatment because I was doing so well. I have participated in…

Meet Danny van Brenk, age 34 who lives with his wife and two children Floris (5) and Isabelle (2) in Heukelum, a small town in the Netherlands. I was diagnosed February 2014 with intrahepatic cholangiocarcinoma. Doctors found tumors in 70% in my liver and I have lung metastases. I was told by the doctors in the Netherlands that there…

“Collective Wisdom” is the theme for this year’s ASCO’s Annual Meeting in Chicago. Our attending team includes Melinda, Barbara, Jason, Andie, Kathi, Donna, Stacie and Marion. Melinda and Barbara staffed the exhibit while the rest of our team were dispersed throughout the conference halls attending sessions or connecting with the various biopharma industry, researchers, physicians and advocates. In…

It has been awhile since I last wrote. My apologies. I have good intentions but then I get home from work and sometimes the thought of starring at the screen doesn’t sound so fun. However, I feel this is an important topic, chemo. I asked my trusty group of cholangio friends the following questions: What’s…

Cancer is a scary word. Cholangiocarcinoma is an even scarier word. What makes it better is finding other people affected by Cholangiocarcinoma. It’s no easy feat, I know. It’s a small community with only 2-3,00 people diagnosed each year in the United States. The more people you connect with the better you feel. At least…

Awhile ago I asked a group of people and not just ordinary people but cholangiocarcinoma fighters, what’s one piece of advice you’d give about anything related to Cholangiocarcinoma? Below are their exact responses but first my piece of advice is; DON’T LISTEN TO THE STATISTICS! “Perfect advice….6 months…to what…Perfect my karaoke voice and hip shake” “Go…

I was asked by the Foundation to share this story. I was more than happy to. It’s an incredible story and full of inspiration. I have talked to many people who have been told they are/were unable to have a resection. I know some of the those people endured months of chemo and radiation and…

On August 4, 2015, I celebrated my one year anniversary of being “cancer free” or NED (no evidence of disease) as my doctor says. It was an important day for me. More than anyone could truly understand. I decided on that day because it was when I had my surgery and since I had clear…

I have re-written the first sentence of post three times now. Why is it so hard to get what’s in my head down to my fingers and to the keyboard? *sigh* The week of August 4, 2014 to August 11, 2014, is a week I often relive. Have you ever woken up in the middle…

Here I am staring at a blank screen wondering what to type or where to start. Let’s start simple. My name is Sarah and I’m 31 years old. I am a daughter, mother, wife, sister, aunt, cousin, granddaughter, niece, daughter-in-law, sister-in-law, co-worker, and friend. Oh wait! You can add Cholangiocarcinoma warrior and/or survivor. My goal is to…

This presentation focused on the non-operative treatment of intrahepatic cholangiocarcinoma. Over the past 5 years, new technology has allowed much higher doses of radiation to be given safely. These doses are capable of ablating the tumor and preventing it from causing liver failure and death, leading to much longer survival and a realistic chance for…

“Photodynamic Therapy, A Ray of Light in Cholangiocarcinoma: The OPUS Trial” presented by Dr. David E. Loren, Associate Director of Endoscopy and Co-Director of the Pancreaticobiliary Section at Thomas Jefferson University Hospital. Cholangiocarcinoma is a disease that often leaves patients and their physicians feeling that they have few options for treatment. This presentation discusses an emerging…

Long-distance runner Bill Merriam’s diagnosis of cholangiocarcinoma never slowed him down. Bill is featured in the premiere issue of Beating Cancer, a new online magazine for those who want to “kick cancer in the teeth.” Read this article and view his video message to you. Click here to view our webchat.

Sumera H. Rizvi, MBBS, a fellow in the division of Gastroenterology and Hepatology at Mayo Clinic, Rochester, discusses the three types of cholangiocarcinoma (bile duct cancer) and some treatments that are available.

Fundraiser Spotlight: Andrea Remembered On January 10th, AndreaRemembered.org held the fourth annual “Andrea’s Night at the Discovery Lodge”. More than 500 people were in attendance to celebrate her life and raise funds for the Cholangiocarcinoma Foundation and the Andrea M. Fuquay Memorial Scholarship at the University of Southern Indiana. This year, the “Andrea’s Night at…

Title: Surgical Management of Cholangiocarcinoma – State of the Art and Beyond When:Thursday, Nov 13, 2014, 3:00 PM – 4:00 PM EST Presented by: Dr. Tomoaki Kato, Chief of the Division of Abdominal Organ Transplantation at New York-Presbyterian Hospital/Columbia University Medical Center Description: This webinar will feature Dr. Tomoaki Kato, a renowned expert in liver and intestinal…

Click here to download the presentation (.pdf) Topic: Using Patients’ Own Immune System to Knock-out Cancer: Adoptive Cell Therapy Presenters: Steven A. Rosenberg, M.D., Ph.D., National Cancer Institute Eric Tran, Ph.D., National Institutes of Health Surgery Branch, Tumor Immunology Section Melinda Bachini, CCF Patient Advocate and NIH Research Study Participant Overview: Join Dr. Steven A. Rosenberg (National Cancer Institute)…

On September 29, CCF held its first web chat with guest speaker Bill Merriam. Bill recently created a new video for the Foundation to share his perspective on cancer. Participants were able to submit questions in advance and join the web chat to hear directly from Bill. Bill is the father of 6 and grandfather…

Some people with cholangiocarcinoma are unable to be cured because their tumor is either inoperable or has spread. These patients can develop blockages of the bile ducts or intestines causing jaundice, severe itching, nausea and/or vomiting. Palliative surgery or endoscopic procedures may be able to provide relief of symptoms. We will be discussing the role…

An Important FREE Webinar: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobilliary Neoplasia Biorepository” When: Monday, July 14, 2014 4:00-5:00 PM (EST) Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN Purpose: Educate patients, supporters and caregivers to understand how Mayo Clinic is using the information and bio-specimens provided to improve care all for…

Topic: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobiliary Neoplasia Biorepository” Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN Purpose: Educate patients so they better understand how Mayo Clinic is using the information and bio-specimens they provide to improve care all for cholangiocarcinoma patients. Download the Powerpoint Presentation

For those of you in the Sonoma, CA area, please consider attending “The 2014 Sonoma Bili Project Experience” on August 2nd hosted by The Bili Project Foundation. The event hosted by Cedric the Entertainer includes dinner, live and silent auctions, and celebrity golf foursomes. Proceeds benefit the UCSF Hepatobiliary Tissue Bank. For more information, contact…

Cholangiocarcinoma patient, Valarie Spiser–Albert beat the odds with her positive attitude Three years ago, Valarie Spiser-Albert was diagnosed with cholangiocarcinoma. She was told she had 6-8 months to live but her with her positive attitude, she beat the odds! Check out her story and video. Thanks for KSAT TV for sharing this inspirational story. http://www.ksat.com/news/cancer-patient-says-she-beat-odds-with-positive-attitude/25478826

Who was Jo Bryant? Jo Bryant was a healthy, working teacher and a very involved mother and grandmother when she went to the doctor for back pain. (She taught for 43 years, up until the day she was hospitalized.) After tests and a biopsy, a week later, she was diagnosed with cholangiocarcinoma. Her health quickly…

Forty years after becoming a father for the first time, six children and thirteen grandchildren later, the question has to be; how has my life been changed through all these years in the role of dad and grandpa? The simple answer…I can’t possibly fathom how different…

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