Whispers Over My Shoulder

Excerpt from the ASCO Post, by Mairéad Geraldine McNamara, MB, PhD.  When I interviewed for my current post as a first-time consultant in medical oncology in the United Kingdom, I was asked about my 5-year career plan. I remember some detail of my reply, but I don’t think it even remotely encompassed the depth of insight…

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Journey of Hope: Day 41

Well, here I am on the eve of the conclusion of my 15,000 mile Journey of Hope. I’ve checked off all the boxes of the milestones I originally set out to achieve. At least I thought I had…

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Journey of Hope: Day 34

“Toto, I have a feeling we’re not in Kansas anymore!” I had been waiting to say that through the first 41 states I visited. Now that I’m in NE., it’s officially stated!

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Journey of Hope: Day 32

Today, I made my way through two more towns named Hope; one in OH., and one in IN. I came to the realization that I’ve been in five small towns named Hope over the past four Sunday’s.

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Journey of Hope: Day 31

As I get into the last 5,000 miles of my Journey of Hope, I’m excited to see what lies ahead. This includes visits with warriors, caregivers, doctors, spontaneous encounters with the “unknowing”, and continuing to experience the vastness of our country.

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Journey of Hope: Day 30

Happy, Happy Valley! This is my second visit to Happy Valley in the past four weeks. The difference is the first time was in OR., and tonight I’m in PA; about 2,670 miles away.

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Journey of Hope: Day 29

Headed east from Weston, WV, to Sparta, NJ, for a night of rest before starting the final 1/3 of my journey Friday afternoon. It was another beautiful day traveling through WV, western MD, PA, and back into NJ.

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Journey of Hope: Day 27

“Pushing a rock, pushing a rock”. As part of my journey I’m leaving a trail of Hope rocks that Linda painted across the country; in each of the 48 states, and in towns named Hope.

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Journey of Hope: Day 23

Anyone know where the tallest cast iron statue in the U.S. is located, and what its’ name is? As I approached my first meeting location of the day, in Birmingham, AL, I observed a significant statue on a pedestal on a high point in the city.

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Journey of Hope: Day 22

Have you ever had one of those days when you realize how finely tuned our lives are? That is until a few minor quirks get in the way. Today was one of those days for me.

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Journey of Hope: Day 21

As it’s the 15th anniversary of the Cholangiocarcinoma Foundation, many people now know that I’ve incorporated the number 15 into my journey in a variety of ways.

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Journey of Hope: Day 17

After a two-minute visit to the beach for a quick photo of the Atlantic Ocean, I left Ogunquit, ME @ 6:30 a.m., and headed two hours south to Holliston, MA, and the home of Kim Balkus.

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Journey of Hope: Day 15

I don’t want to jinx myself, however, the Journey just keeps getting more meaningful to me by the day! Now I’m starting to think how can it be possible that I only have 9,375 miles to go?!

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Journey of Hope: Day 14

Remember the movie Cast Away starring Tom Hanks and his companion Wilson, the soccer ball? Well, I had one of those episodes today, when Mike O’Langio my Mutations Matter photo bud seemed to have disappeared.

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Journey of Hope: Day 13

What an inspiring day! My first stop this morning was in Akron, OH, where I was met by a “sea of green” at the home of Lisa (warrior and mentor) and David Craine.

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Journey of Hope: Day 12

I have to admit, this was a long day. As I planned the journey, I knew that was going to be the case, however, I didn’t plan on the hotel story at the end of the day.

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Journey of Hope: Day 11

Wow, another eventful day! The day started with me dropping Linda off at O’Hare Airport for her journey home to NJ, so as to be with our grandson, Austin, this week for “bus duty”.

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Journey of Hope: Day 10

It was a beautiful, cool, cloudless morning when Linda and I departed Rochester, MN, today. Our first official stop was about 275 miles away, fairly close to Milwaukee.

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Journey of Hope: Day 9

Departing from Watertown, SD, we headed in a southeasterly direction to Hope, MN., over a variety of roads, including interstates, two-lane state and county roads, plus an added bonus of dirt! It’s amazing what supposed shortcuts GPS will produce at times!

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Journey of Hope: Day 8

As we departed Dickinson, ND, this morning, we were greeted with a windy 35°, and snow showers! Quite a difference for those in New England talking about how hot it is at 90°. Driving east on I-94 our first stop was to see Salem Sue, the world’s largest Holstein cow!

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Journey of Hope: Day 7

We started our A.M. drive in Livingston, MT, and proceeded to Billings, MT. to pick up Melinda Bacchini, a CC Warrior who is also on the staff of the foundation. Melinda is Director of Patient Advocacy and an 11½ year survivor.

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Journey of Hope: Day 6

We saw a lot of gorgeous scenery today, including Sandpoint and Hope, ID, as well as East Hope, and believe it or not, an area known as Beyond Hope! The beauty continued into MT. with diverse scenery and weather conditions along MT Route 200 and I-90 eastbound before the pouring rain started in Anaconda, MT.

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Journey of Hope: Day 5

This morning, Linda and I had the opportunity for a meet-up outside the Fred Hutch Cancer Center in Seattle. Our mission was to thank doctors who are improving the lives and finding a cure, for cholangiocarcinoma patients, now and in the future.

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Journey of Hope: Day 4

This morning Linda and I had the opportunity to meet in the Vancouver, WA area, with one of my ex-colleagues, his wife, and daughter, Sara. Two years ago, Sara was a recipient of the Sarah Fleischer Bennett memorial scholarship.

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Journey of Hope: Day 3

Day three of the JoH was another day full of fulfilling visits, beautiful scenery and variations in weather, including rain, heavy fog on the curvy roads of the Cascades, then sunshine.

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Journey of Hope: Day 2

Day two of our journey had Linda and I heading west from Twin Falls to Boise, ID for a scheduled meet up with Cindy Thomas of the Cholangiocarcinoma Foundation staff, and Steven Banks, a local cholangiocarcinoma warrior.

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Journey of Hope: Day 1

After a great send off from Ken Garff Honda, Orem, UT, Linda and I began our 15,000 mile journey. With the foundation celebrating its’ 15th anniversary, our first duty was to commence the drive on I-15 northbound.

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Cheer Dave On!

May 20th was an exhilarating day for CCF. Friends, family, and other locals gathered together with signs and balloons as Dave Fleischer left on his 15,000 mile Journey of Hope in honor of their daughter Sarah.

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Bundles of Hope

Dear Friends, This year CCF is celebrating 15 years of providing love, comfort, and hope to the cholangiocarcinoma community. We are honored to serve as Co-Chairs of the 15th Anniversary Steering committee. We hope you have been enjoying the monthly “What’s Your 15?” opportunities to remember, reflect and give back to this community we have…

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Eat to Beat Disease

“Let food by thy medicine and let medicine be thy food”.  Hippocrates is thought to be the source of this quote, but Dr. William Li, world-renowned physician, scientist, and author, reiterated this concept during his keynote speech at the Cholangiocarcinoma Foundation’s Annual Conference on August 4, 2020.  Dr. Li authored a recently published book entitled,…

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Longterm Patient Highlight – Tom Leitzke

My name is Tom Leitzke. I was born and raised in Sandusky, Ohio, and was living as an expatriate in Japan, managing global operations for a publicly-traded robotics company when I was diagnosed with perihilar cholangiocarcinoma (stage 3B) in 2007. I was 58.

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Cholangiocarcinoma Foundation celebrates FDA’s Breakthrough Therapy Designation for Zanidatamab in Patients with Biliary Tract Cancer

The Cholangiocarcinoma Foundation (CCF) celebrates the November 30, 2020 FDA breakthrough therapy designation for Zanidatamab in patients with previously-treated HER2 gene-amplified biliary tract cancer. A HER-2 or Human Epidermal Growth Factor Receptor 2 mutation occurs when cancer causes the HER-2 cell to produce too much protein, resulting in cells dividing and growing too fast. HER-2…

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Alie Plouff and Candles for the Cure

My name is Alie Plouff, and I am a volunteer and former caregiver with the Cholangiocarcinoma Foundation. I first discovered the Cholangiocarcinoma Foundation when my parents returned home from the Annual Conference in Salt Lake City in 2016.

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Your Year-End Giving Can Make A Long-Term Impact

Three impactful ways you can make a year-end gift As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. One good thing to come out of the COVID Pandemic is the CARES Act (Coronavirus Aid, Relief, and Economic Security Act) provisions for charitable giving. The…

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Cholangiocarcinoma Foundation celebrates FDA’s Acceptance Of New Drug Application For Infigratinib For The Treatment Of Cholangiocarcinoma

On behalf of patients and families impacted by cholangiocarcinoma, the Cholangiocarcinoma Foundation (CCF) celebrates the December 1, 2020 FDA acceptance of Infigratinib. QED Therapeutics, is a subsidiary of BridgeBio, which is focused on precision medicine for FGFR-driven cancers. Infigratinib is an oral FGFR1-3 selective inhibitor, for individuals with cholangiocarcinoma, or cancer of the bile ducts.…

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Survivor Highlight: Libby Wolfe

My name is Libby Wolfe. I live in Pewaukee, Wisconsin. I grew up in Connecticut, went to college in Virginia, and moved to Chicago in the 1970s. In Chicago, I worked as a property manager for a Real Estate firm.

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Patient Support Group

Each week we present the latest information and updates relevant to the CCF community. Support Groups will be held the 1st (Patient) and 3rd (Caregiver) week of every month and Educational Webinars will be held on the 2nd and 4th week of each month. Please join us the first Thursday of the month for a…

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Stacie Lindsey to Receive Luminary Award for Advances in GI Cancers

Stacie C. Lindsey, Chief Executive Officer & Founder of the Cholangiocarcinoma Foundation is one of five leading individuals who will receive a Luminary Award in GI Cancers from OncLive and The Ruesch Center at their virtual 11th Annual Ruesch Symposium. The award winners are being honored for their lifetime achievements focused on finding cures for…

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Giving Thanks by Giving Back

Help us meet our goal of 100 new sign-ups by 2021! Join the CCF registry through Ciitizen to advance research for cholangiocarcinoma, and Ciitizen will donate $25 to CCF. During the “Giving Thanks by Giving Back” Campaign, CCF and Ciitizen are partnering up with the goal of helping at least 100 patients collect, summarize and share…

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#GivingTuesday 2020

Giving is not just about making a donation, it’s about making a difference! Last year on Giving Tuesday, people came together on Facebook to raise more than $120 million to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to…

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Webinar: NuTide 121 Clinical Trial

NuCana will introduce the science behind NUC-1031, the medicine being compared in combination with cisplatin in the NuTide:121 study against the current standard of care in Biliary Tract Cancer, gemcitabine and cisplatin.

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CCF wants you to join it’s first ever Turkey Trot

Join the Cholangiocarcinoma Foundation’s first Virtual Turkey Trot Run/Bike/Walk! TeamCCF and the Cholangiocarcinoma Foundation are hosting their 1st Annual Virtual Turkey Trot. It is open to different physical activities such as running, biking, or walking. The goal is to encourage participation in healthy and fun physical activity while raising funds for cancer research. Participants choose…

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Roz Kuvakos, A Life Rooted in Aloha

Roz has always been very healthy and active, especially among us sibs, and the news of her having cholangio took us by storm. Being the first born, her “to do” list began to grow: schedule doctor appointments, research on how to fight this unknown disease…

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Five for Friday – 5 of our latest blog posts

The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements. Patients share news and personal anecdotes, and the blog also serves as a resource for you to familiarize themselves with the Foundation.

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