100 Questions & Answers About Cholangiocarcinoma, Gallbladder and Bile Duct Cancers
by Dr. Ghassan Abou-Alfa & Dr. Eileen M. O’Reilly
Receiving a cholangiocarcinoma (bile duct cancer) diagnosis can be overwhelming.
We are here to help walk you through every step of treatment.
TAKING THE FIRST STEPS
Nobody has to face Cholangiocarcinoma (CCA) alone.
ROADMAP
These next steps should help those with CCA and their loved ones find answers, support and hope during the first few weeks, months or years after diagnosis.
Are you or a loved one navigating a cholangiocarcinoma diagnosis?
CCF understands that a diagnosis can leave patients feeling isolated and afraid. Whether you’re newly diagnosed or new to the Foundation, we are here to support you and your loved ones. You are not alone.
To help us better guide you, we encourage you to take our Welcome Survey and join our Newly Diagnosed/Newly Connected program.
This survey takes 10 minutes to complete and provides quick access to resources such as:
- A Newly Diagnosed/Newly Connected Care Kit
- Navigating a Cholangiocarcinoma Diagnosis: Resource Roadmap Workbook and its related webinar hosted by our Chief Patient Officer and our Newly Connected email series
- A 1:1 meeting with a CCF Patient Advocate
You’ll learn about support groups, CCF’s mentorship program, free books, and more.
1
Find the Right Team
No, really. It’s important.
If you have been diagnosed with cholangiocarcinoma, the single most important thing you can do is to see an oncologist and surgeon who specialize in your specific type of cancer; this may require a second opinion. When it comes to treating cancer, expertise can mean the difference between life and death.
Your specialist should:
- Have experience treating many other patients like you
- Be involved in ongoing research
- Have clinical trials available for you
2
Get the Right Treatment
Get the Right Tests & Find the Right Treatment for Cholangiocarcinoma
BIOMARKERS
Ask your doctor about biomarker testing (molecular profiling). Biomarker testing scans the DNA of your cancer cells for cancer-causing genetic mutations and other molecular abnormalities. This information can be used to match some patients to the most effective treatment available, whether it’s an existing drug or one under study in a clinical trial.
While comprehensive biomarker testing is not yet routine, it is covered for all Medicare patients with advanced solid tumors. It is also increasingly offered at academic medical centers and is frequently part of clinical trial protocols.
CLINICAL TRIAL
Most cancers, when first diagnosed, have a standard of care: a treatment regimen that is widely accepted as the best approach to fighting the disease. The standard of care for cholangiocarcinoma can be found by looking at the National Comprehensive Cancer Network guidelines, which are based on the most up-to-date scientific evidence.
ANNOUNCEMENTS
Patients on 5-FU or Capecitabine (Xeloda)
Be aware of potential for an adverse drug reaction if not pre-screened for DPD Enzyme deficiency
Participant Engagement & Cancer Genome Sequencing Program
Volunteers needed for “Moonshot Program”
3
Participate in Patient-Powered Research
International Cholangiocarcinoma Patient Registry
You have the option to share your health data and drive patient power research, including biomarker testing data and other health information, with the research community. Gathering and analyzing patient data can help researchers generate new discoveries and treatments that could directly impact your care and improve the lives of future generations. Please consider sharing your data.
4. Get Connected & Find Support
4
Get Connected & Find Support
You Are Not Alone
Having the support of others is an important part of cancer survival. Research shows that taking part in support groups, where you both give and receive help, is an effective way to reduce the stress and anxiety that can come with diagnosis.
CONNECT WITH US ON SOCIAL
Cholangiocarcinoma Warriors
(not affiliated with CCF)
Cholangiocarcinoma Immunotherapy & Targeted Therapy
(not affiliated with CCF)
BOOKS TO ORDER
FGFR Inhibitor Symptom Management Kit
An FGFR (Fibroblast Growth Factor Receptor) alteration such as a fusion or rearrangement can lead to abnormal cell growth and is often linked to certain cancers. Specifically, an FGFR2 mutation affects cell division and growth, making it a target for treatments.
If you have an FGFR alteration such as a fusion or rearrangement, you are eligible for a free care kit.
Complete this short order form, and we will mail kits to all eligible households within ten business days.
Eligible households include:
- The patient has the FGFR2 mutation.
- The patient lives in the United States.
5. Caregiver Resources
5
Caregiver Resources
CAREGIVER VOICES
Ambuj Srivastava
CCA Caregiver since 2019
Toronto, Canada
Jill Neubauer
CCA Caregiver since 2019
HUNTINGTON, WV
Laura Lee
CCA Caregiver since 2019
Durham, Nc
CAREGIVER RESOURCES
The Caregiver Support Video Series
American Cancer Society
Caregiver Resource Guide
American Cancer Society
What a Cancer Caregiver Does
American Cancer Society
Tips for Caregivers
Cancer Treatment Centers of America
AARP’s Family Caregiver Resource Guides
AARP
Caring for a Loved One
Cancer.net
Support for Caregivers of Cancer Patients
National Cancer Institute
For Caregivers: Practical Tips to Cope
CancerCare
The Intelligent Nutrition Assistant
(INA)
Social Security Disability FAQs
CCA Caregivers Facebook Group
OTHER RESOURCES
Managing Mental Health After a Cancer Diagnosis
American Cancer Society
Cholangiocarcinoma Acronyms and Abbreviations
Ask about your care, clinical trials and palliative care
produced in partnership with the Oncology Dietician Practice Group (ON DPG)
Biliary Emergency Information Card
to assist any medical personnel that may be treating you
Biomarker Testing
Read even more about Biomarker Testing and how it can personalize your treatment
Interactive Guide to Cholangiocarcinoma brochure
by Dr. Ghassan Abou-Alfa & Dr. Eileen M. O’Reilly
SURVIVOR STORIES
Jonathan Spikes’ Story
CCA Patient
SURVIVOR STORIES
Matt Reidy’s Story
CCA Patient
SURVIVOR STORIES
Sharon Hockenberry’s Story
CCA Patient
SURVIVOR STORIES
Stephanie Kleine-Ahlbrandt’s Story
CCA Patient
Thank You Partners and Sponsors
Thank you to AstraZeneca for providing 200 care kits to cancer patients in Canada
and sponsoring our Research Advocacy Training program.
