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Resources

Welcome to our comprehensive resource hub for individuals navigating cholangiocarcinoma. In addition to the valuable resources offered directly by the Cholangiocarcinoma Foundation, we have curated a diverse selection of external resources that provide a wealth of information, support, and guidance. Please note that the Cholangiocarcinoma Foundation does not endorse any of the specific organizations listed on this page, but offers these sites as potential sources of information and financial assistance which may be helpful for patients and caregivers.

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The following books have been suggested by patients and caregivers. If you have any suggestions, please reach out to [email protected].

  • Atlas of the Heart
    Author: Brené Brown
    Description: Explores emotions and experiences that define humanity, offering tools for resilience and connection.
  • The Book of Awakening
    Author: Mark Nepo
    Description: A spiritual daybook encouraging daily presence and savoring life’s beauty.
  • Everything to Stand
    Author: Glen Dalakian Sr.
    Description: A man who faced cholangiocarcinoma with resilience shares his story, offering personal insight and encouragement for others navigating this rare cancer.
  • Falling Down and Getting Up
    Author: Mark Nepo
    Description: A guide to transforming adversity into opportunities for renewal and deepening.
  • Jesus Calling
    Author: Sarah Young
    Description: A devotional with 365 reflections offering comfort, hope, and Scripture-based guidance.
  • Living While Incurable: An Unexpected Gift
    Authors: Pam Fisher
    Description: Pam’s personal story gives readers a deeper look at her life with cholangiocarcinoma, discovering along the way how to embrace her new reality with hope and courage.
  • Option B
    Authors: Sheryl Sandberg and Adam Grant
    Description: Explores resilience, compassion, and building strength in the face of adversity.
  • The One Year Uncommon Life Daily Challenge
    Author: Tony Dungy
    Description: Daily reflections on integrity, faith, and creating a meaningful life.
  • Seven Thousand Ways to Listen
    Author: Mark Nepo
    Description: Explores listening as a spiritual practice through memoir and meditations.
  • Who Moved My Cheese?
    Author: Spencer Johnson
    Description: A motivational fable about adapting to change in work and life.

The following books have been suggested by patients and caregivers. If you have any suggestions, please reach out to [email protected].

  • The Caregiver’s Tao Te Ching: Compassionate Caring for Your Loved Ones and Yourself
    Authors: William Martin & Nancy Martin
    Description: A philosophical guide emphasizing self-care and compassion in caregiving.
  • Healing Your Grieving Heart When Someone You Care About is Dying: 100 Practical Ideas for Family, Friends, and Caregivers
    Author: Alan Wolfelt
    Description: Practical strategies for anticipatory grief, designed for caregivers navigating the dying process.
  • The Four Things That Matter Most: A Book About Living
    Author: Ira Byock
    Description: Focuses on the essential things to say and do with loved ones before it’s too late.
  • Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
    Authors: Patricia Kelley and Maggie Callanan
    Description: Explores the unique awareness and communications of the dying, offering insights for caregivers.
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

Article
The Caregiver Support Video Series

American Cancer Society

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Article
Caregiver Resource Guide

American Cancer Society

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Article
What a Cancer Caregiver Does

American Cancer Society

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Article
Tips for Caregivers

Cancer Treatment Centers of America

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Article
AARP’s Family Caregiver Resource Guides

AARP

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Article
Caring for a Loved One

Cancer.net

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Article
Support for Caregivers of Cancer Patients

National Cancer Institute

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Article
For Caregivers: Practical Tips to Cope

CancerCare

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Article
The Intelligent Nutrition Assistant

(INA)

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FAQ
Social Security Disability FAQs

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Social
CCA Caregivers Facebook Group

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OTHER RESOURCES

Article
Managing Mental Health After a Cancer Diagnosis

American Cancer Society

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Article
Cholangiocarcinoma Acronyms and Abbreviations

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Article
Ask about your care, clinical trials and palliative care

produced in partnership with the Oncology Dietician Practice Group (ON DPG)

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Link
Biliary Emergency Information Card

to assist any medical personnel that may be treating you

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Article
Biomarker Testing

Read even more about Biomarker Testing and how it can personalize your treatment

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Brochure
Interactive Guide to Cholangiocarcinoma brochure

by Dr. Ghassan Abou-Alfa & Dr. Eileen M. O’Reilly

LEARN MORE

The following books have been suggested by patients and caregivers. If you have any suggestions, please reach out to [email protected].

  • A Grief Observed
    Author: C.S. Lewis
    Description: An unflinchingly truthful account of grief, faith, and meaning after loss.
  • A Time to Grieve, Experiencing Grief, Finding Hope and Healing, & Rebuilding and Remembering (Journeying through Grief series)
    Author: Kenneth C. Haugk
    Description: A set of four short books offering support during the first year after the loss of a loved one. Christian themes.
  • The Beauty of What Remains
    Author: Steve Leder
    Description: Reflections on how death teaches us to live and love more deeply.
  • Comfort Book
    Author: Matt Haig
    Description: Notes and stories written as reminders that things are not always as dark as they seem.
  • Everything Happens for a Reason and Other Lies I’ve Loved
    Author: Kate Bowler
    Description: A memoir of illness and faith, mixing humor and insight on dying and living.
  • Finding Meaning: The Sixth Stage of Grief
    Author: David Kessler
    Description: Offers a roadmap to remembering loved ones with more love than pain.
  • Grief One Day at a Time
    Author: Alan Wolfelt
    Description: Daily reflections and quotes to guide healing after loss.
  • Healing After Loss
    Author: Martha Hickman
    Description: Daily meditations on grief and finding blessings in memories.
  • I Wasn’t Ready to Say Goodbye
    Authors: Brook Noel and Pamela D. Blair
    Description: A compassionate guide for surviving and healing after the sudden death of a loved one.
  • It’s OK That You’re Not OK
    Author: Megan Devine
    Description: Challenges cultural expectations around grief, offering healthier ways to live alongside loss.
  • On Death and Dying
    Author: Elisabeth Kübler-Ross
    Description: Introduced the five stages of grief and transformed the field of death and dying.
  • Signs: The Secret Language of the Universe
    Author: Laura Lynne Jackson
    Description: Explains how to recognize and understand signs from the other side.

Insurance, Housing, Prescription Assistance

  • Accessia Health
    accessiahealth.org
    Co-pay assistance, insurance premium support, prescription drug assistance, rent/mortgage assistance
  • The Assistance Fund
    tafcares.org
    Co-pay assistance, prescription drug assistance, insurance premium support (100 programs tied to FDA-approved treatments)
  • Center for Medicare and Medicaid Services (CMS)
    cms.gov
    Prescription drug assistance, co-pay assistance, insurance premium support, legal aid
  • Dental Lifeline Network
    dentallifeline.org
    Dental care for seniors, veterans, and underserved patients
  • FundFinder (PAN Foundation)
    fundfinder.panfoundation.org
    Search tool for financial assistance programs
  • Good Days
    mygooddays.org
    Co-pay assistance, travel, and insurance premium support
  • HealthWell Foundation
    healthwellfoundation.org
    Co-pay, prescription, and insurance premium assistance
  • Hill-Burton Free and Reduced-Cost Healthcare
    No central website – government program for free/reduced hospital care
  • LIHEAP
    acf.hhs.gov
    Utility bill assistance for low-income households
  • Medical Assistance Tool
    mat.org
    Search engine for patient assistance resources
  • Mike Shane Memorial Fund
    mikeshanefund.org
    Telehealth second opinions for cholangiocarcinoma patients
  • NeedyMeds
    needymeds.org
    Database of prescription assistance programs
  • No Patient Left Behind
    nopatientleftbehind.org
    Policy advocacy and network to reduce treatment costs
  • Patient Access Network Foundation
    panfoundation.org
    Co-pay, premium, and travel assistance (disease-specific)
  • Patient Advocate Foundation
    patientadvocate.org
    Grants for medical, travel, rent, utilities, and case management
  • RX Assist
    rxassist.org
    Database of drug cost assistance programs
  • The Samfund (via Expect Miracles Foundation)
    expectmiraclesfoundation.org
    Grants for young adult survivors (rent, tuition, utilities)
  • Sean F. Hogan Foundation
    seanstrong.org
    Childcare assistance for parents with cancer

Transportation

  • Air Charity Network
    aircharitynetwork.org
    Free air transportation
  • Angel Flight East
    angelflighteast.org
    Non-emergency air transport
  • Corporate Angel Network
    corpangelnetwork.org
    Free airfare for cancer patients, donors, and recipients
  • Fisher House Foundation
    fisherhouse.org
    Free lodging near military and VA hospitals
  • For Pete’s Sake Cancer Respite Foundation
    takeabreakfromcancer.org
    Travel respite and staycation programs
  • Good Days
    mygooddays.org
    Co-pay assistance, travel, and insurance premium support
  • Healthcare Hospitality Network
    hhnetwork.org
    Nationwide lodging network for patients traveling for care
  • Joe’s House
    joehouse.org
    Directory of lodging near cancer centers
  • Lazarex Cancer Foundation
    lazarex.org
    Clinical trial support, travel, and financial aid
  • LifeLine Pilots
    lifelinepilots.org
    Volunteer pilots offering free air transport
  • National Patient Travel Center
    mercymedical.org
    Air and ground travel assistance
  • Patient Airlift Services
    palservices.org
    Volunteer pilot air transport
  • Patient Access Network Foundation
    panfoundation.org
    Co-pay, premium, and travel assistance (disease-specific)
  • Patient Advocate Foundation
    patientadvocate.org
    Grants for medical, travel, rent, utilities, and case management
  • RO Foundation
    rofoundation.com
    Travel, lodging, gas, and food assistance (Dunkirk, NY area)
  • SkyHope
    skyhope.com
    Free air transportation

Fertility

Experiences & Services

  • 3 Little Birds 4 Life
    3littlebirds4life.org
    Gift – Care package, flower delivery, meals
  • Camp Kesem
    kesem.org
    Free summer camps and virtual support for children of parents with cancer
  • Cancer Financial Assistance Coalition (CFAC)
    cancerfac.org
    Coalition of organizations; referrals to member groups
  • Cleaning for a Reason
    cleaningforareason.org
    Free cleaning service for patients in treatment, recovery, or hospice
  • Deliver the Dream
    deliverthedream.org
    Therapeutic programs and healing retreats for families facing serious illness
  • Jack and Jill Late Stage Cancer Foundation
    jajf.org
    Experiences for children losing a parent to terminal cancer
  • Joe Garassino Foundation
    joegarassino.org
    Grants for CCA and other cancer patients; local to Waterbury, CT
  • Just a Break from Cancer
    justabreak.org
    Gift packages including gas cards, food, hotel stays (Utah only)
  • Inheritance of Hope
    inheritanceofhope.org
    Retreats, peer support, legacy programs for families of terminally ill parents

Military & Veterans

  • Coast Guard Mutual Assistance
    cgmahq.org
    Loans, grants, and financial counseling for Coast Guard members and families
  • Dream Foundation
    dreamfoundation.org
    Wishes, veteran support, food and utility bill assistance
  • Fisher House Foundation
    fisherhouse.org
    Free lodging near military and VA hospitals

Please note that the Cholangiocarcinoma Foundation does not endorse any of the specific organizations listed on this page, but offers these sites as potential sources of information and financial assistance, which may be helpful for patients and caregivers.