- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS AND WEBINARS
- SCIENTIFIC UPDATE
|
|
- TEAMCCF UPDATE
- SURVIVOR STORY
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- UPCOMING EVENTS
|
|
Each month, we recognize those whose contributions inspire us and who demonstrate excellence with their service to others. We thank those outstanding individuals and honor their immense efforts, time, and resources that are generously given to the Foundation. |
|
Laura loves spending time with her dad. |
|
Laura is an investigative journalist from North Carolina. She has lived up and down the East Coast but prefers to be close to her parents, sister, and the cutest niece and nephews around. Laura attended law school at UNC, Chapel Hill, and eventually discovered her love of research and educational journalism. During the pandemic, she has enjoyed cycling and yoga in her free time.
Laura’s dad was diagnosed with cholangiocarcinoma by a local physician, who happened to be a long-time family friend. Following a simple and brief complaint of muscle pain around his stomach, the doctor decided further evaluation was warranted six months later during the next checkup. Relatively quickly scans confirmed the worst. Intrahepatic cholangiocarcinoma yielded bleak results on Google, but Laura immediately went to work. If there was one thing law school had taught her, it was that she could do the research and educate herself about any issue. She locked herself in a study room at a local library. She went to work reading medical journals, and then to other medical journals to teach herself the definitions of the acronyms and medical terminology. Soon she could read the latest journal articles and have an accurate understanding.
Waiting to see a cholangiocarcinoma specialist was terrifyingly long as the family did not want to close any doors for treatment options. Still, they also clearly understood the time was precious. Her dad had done biomarker testing and, with an IDH1 mutation, was put on tipsovo outside of a clinical trial. He saw success as the large tumor shrank, yet satellite tumors had grown. The medical team recommended a liver transplant, but tests were needed before approval could be granted. The waiting during the testing for transplant recommendations was a stressful time. The family held their breath as every test result came in as they hoped of eligibility. On an emotional roller coaster ride, her dad was recommended for transplant but declined coverage to do so by their insurance company. After five levels of appeal and a hearing in February of 2020, the appeal was only recently denied again in recent weeks.
Laura volunteers as a research advocate and feels patients and families need to understand complex topics in lay terms. She feels she was fortunate enough to have time and resources to investigate the disease, but knows other families lack that opportunity and she wants to share the information she has learned. Laura knows it is critical to have an information-sharing connection. Patients benefit tremendously by talking to other patients. Her efforts bring the patient voice forward. Laura motivates others to push themselves to be their own best advocate. Laura shares, “while the medical team may know more about cholangiocarcinoma, nobody knows more about the patient than me.” She educates patients and caregivers about critical resources and information to share with prospective medical teams. She recently recorded her story in a video for the Caregiver Voices series for the Foundation. Laura emphasizes, “everything you’re reading online is dated.’ Research is creating change daily, and that is exciting. She and her dad stay connected to the Foundation to give others hope. Laura feels that introducing another patient who has tried a similar treatment and is still doing well can be a great source of hope and encouragement. It is an honor and privilege to recognize Laura Lee as Volunteer of the Month.
|
|
|
|
Veterans and Cholangiocarcinoma -
Lourdes Rocha
|
Lourdes shared on interview on RadioACTive speaking to her work and involvement with CCF's Veterans Project.
She touched on:
- risk factors, including agent orange and liver fluke
- VA claims and appeals
- gathered research
|
|
|
|
|
|
Giving Tuesday
November 30, 2021
|
We are so grateful for the generous outpouring of support for our #GivingTuesday campaign. We are pleased to report that we have raised more than $165k - which includes a generous $50k in matching funds from Glen & Maria Vandervoort.
|
|
|
|
Congratulations to Eric Parker! He hosted his 4th Annual Jingle for Janet 5k run/walk on Christmas Eve in Waterford, Wisconsin. Parker hosts the annual 5k in memory of his wife, Janet, who fought tirelessly for four years to beat cholangiocarcinoma. Jingle for Janet has raised nearly $18,000 in the first three years. After going virtual in 2020, this year was back in-person with a virtual option. More than $8,500 was raised with 214 registered runners, making it the best year yet for the 5k! Thank you so much for all your work and support, Eric!
|
|
|
|
January Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
|
2:00 p.m. MST, on Thursdays
January 13th- Trisalus
January 27th- Relay Tx, 3 p.m. MST
(Note the time change)
|
|
Note: This is a great resource for CholangioConnect Mentors to share with either the newly diagnosed or any new mentees. |
|
SCIENTIFIC AND ADVOCACY UPDATES |
|
Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer
|
Recently, a group of surgeons assessed variations in the short and long-term outcomes among cholangiocarcinoma patients who underwent open surgical resection versus robotic-assisted surgical resection. |
|
|
This retrospective study was presented at the 2021 Americas Hepato-Pancreato-Biliary Association Annual Meeting.
- Between 2004 and 2017, the authors reviewed the National Cancer Database. They identified 1,876 Stage I, II, and III cholangiocarcinoma patients diagnosed and who also underwent surgical resection.
- 1,876 cholangiocarcinoma patients included 1,810 patients who underwent open surgical resection, and 66 patients underwent robotic-assisted surgical resection
- The authors compared the two groups to identify surgical and oncological outcomes variations.
- There was no difference between the two groups in gender, race, insurance coverage, hospital volume, tumor size, pathology grade.
- Patients who underwent robotic-assisted surgery were significantly older than those who had open surgery.
- Evaluation of the outcome between the two groups showed that patients who underwent a robotic-assisted surgical resection had a significantly shorter length of hospital stay; however, there was no difference between the two groups in;
- The median number of removed lymph nodes
- Positive lymph nodes
- Achieving negative resection margin
- 30-day hospital readmission rate
- 90-days mortality rate
In conclusion, this national cohort study demonstrates similar outcomes between cholangiocarcinoma patients undergoing robotic-assisted and open surgery. Thus, future studies should focus on a patient-centered approach in determining the best surgical resection approach.
|
|
Looking for your next race? |
|
Calling all marathon runners! TeamCCF has immediate openings for the Chicago Marathon and will soon start recruiting for the New York City Marathon. Please email meredith@cholangiocarcinoma.org for details.
|
|
|
|
KEEPING HOPE ALIVE
Christy Landon
Having a sense of hope was very important in my experience. After the first scan, after treatment started, there was some positive news of shrinkage. I was feeling pretty elated, hopeful, and optimistic. I excitedly asked what was next. Unfortunately, the answer I received did not match my hopeful optimistic tone, but it set in motion a series of events which led me to meet another survivor.
|
|
Thank you, Taiho Oncology! |
|
|
|
Light it Green For CCA
Free Gifts For You!
|
February is Cholangiocarcinoma Awareness Month. In celebration, we are planning to Light it Green for CCA !
Use the following codes in our Awareness Store to receive a free light bulb and/or a free yard sign. Let's spread the word about cholangiocarcinoma in our hometowns!
Lightbulb2022- good for one free light bulb, including shipping
YardSign2022 - good for one free yard sign, including shipping
|
|
To show appreciation and thank our sponsor, we invite all to use #greenforcca and share photos of your free gifts on social media during February's event. For those without social media, you can upload your photos here.
|
|
For the second consecutive year, this awareness project is made possible with support from
Taiho Oncology.
|
|
 |
Seeking volunteers to create video content to share at the upcoming annual conference. Recordings will be done remotely prior to the conference.
|
|
|
|
Become a volunteer to support the Light it Green for CCA campaign in February of 2022. Find a template letter here, to request buildings near you to go green in February.
|
|
|
|
Delorean and Mandy spend family time together. |
|
Delorean Ostrom runs a marathon a month in 2022 to support his wife, Mandy, and research funding.
January's race is the Walt Disney World Marathon on January 9th. February's race is also scheduled - the Publix Atlanta Marathon on February 27th.
Delorean shares, "Mandy is now recovering and is hopefully cancer-free again.... hopefully it's for good! But if for some reason she isn't, she will continue to fight, and I will continue to be there with support and love for her. She will get to see our girls grow up, and we will grow old together! That's because she fights and because the CCF will continue to fund research and hopefully find a cure."
|
|
|
|
Light it Green for CCA Walk
Wednesday, Feb. 23rd
|
Light it Green for CCA Walk is an evening demonstration in downtown Salt Lake City to commemorate awareness month during the upcoming annual conference. Register for the walk within the annual conference registration. |
|
|
|
|
|
|
|
