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Survivorship Resources

The Journey Continues

The Bone Marrow & Cancer Foundation’s Survivorship Program provides resources that can address the needs of all bone marrow, Hematopoietic Cell Transplantation (HCT), and cord blood transplant survivors, their families, and caregivers. Our goal is to provide education and support for people coping with the physical and emotional challenges of transplantation. Web accessibility to many of these resources means that no matter if you are at home, at a treatment center, or staying in out-patient lodging immediately following discharge, you are not alone; the survivor community is at your fingertips. The website will be an interactive community that serves as a meeting place and shared resource for those who have survived a transplant and their families.

Transplant survivors tell us that while they felt well-prepared for transplant, many were very isolated in the days, weeks, and even months following transplant. The return to “normal” life takes a different path for each person; yet the shared common experiences can provide significant support and encouragement during the process. the Bone Marrow & Cancer Foundation’s Survivorship Program will address the ongoing need for emotional and social support, provide education about transplant and side effect related issues, host online discussion forums about social, physical, and psychological concerns, and help you create a healthy new life.

Post-Transplant Follow-up and Long-term Care

Autologous Post-Transplant Patients’ Guide
Guide for patients transplanted with their own marrow or blood HCT. Developed by the Consumer Advocacy Committee of the Center for International Blood and Marrow Transplant Research (CIBMTR).

Allogeneic Post-Transplant Patients’ Guide
Guide for patients transplanted with bone marrow or blood HCT from a donor. Developed by the Consumer Advocacy Committee of the Center for International Blood and Marrow Transplant Research (CIBMTR).

Long-Term Follow-Up
From Fred Hutchinson Cancer Research Center’s Long-Term Follow-Up (LTFU) program which provides life-long monitoring and care of patients following a bone-marrow or stem-cell transplant. Services may be specific to Fred Hutchinson and the Seattle Cancer Care Alliance (SCCA) patients, but many educational materials, recommended resources, and frequently asked questions are accessible to the general public.

Recognizing and Treating the Long-Term Effects of Transplantation
Series of videos from Memorial Sloan-Kettering Cancer Center about the potential long-term side effects of bone marrow and Hematopoietic Cell Transplantation (HCT) transplantation, and treatments for these complications.

Journey Forward
Free downloadable software to help patients who have recently completed active treatment for cancer to record their ongoing medical care and concerns and to develop a “Survivorship Care Plan” with their health care team.

Physical Effects
Information from Memorial Sloan-Kettering Cancer Center about what are some of the problems caused by treatment, who is at risk, and how these challenges can be managed. Topics include pain, fatigue, sleep disturbances, urinary incontinence, and many more.

Living Well Beyond Cancer
In 21 video interviews, the former director of Dana-Farber Cancer Institute’s adult cancer survivorship program speaks with experts about short- and long-term challenges that cancer survivors face as a result of their disease and treatment experiences.

Post-Treatment Survivorship
Audio recordings from past workshops offered by CancerCare on a variety of topics, including, communicating with your health care team about follow-up care, emotional effects of treatment, fear of recurrence and late effects, transitioning back to work, and many more. Recordings can be listened to on the website or downloaded as MP3 files.

Psychosocial Matters

Your Emotions after Treatment
Tips from Dana-Farber/Brigham and Women’s Cancer Center about dealing with topics such as depression, anxiety, fear, anger, memory, and other post-treatment emotional concerns.

Ways to Maximize a Healthy Survivorship
Managing the risk of second cancers, understanding the long-term effects of treatment, and addressing social, physical, or psychological concerns.

Diet and Nutrition

Diet and Nutrition for Specific Needs
Articles and guidelines from Fred Hutchinson Cancer Research Center’s Long-Term Follow-Up (LTFU) program and the Seattle Cancer Care Alliance about the dietary and nutrition needs of transplant patients.

Nutrition Services
From nutrition experts at Dana-Farber/Brigham and Women’s Cancer Center, guide to help with planning meals and managing side effects, “Ask the Nutritionist” question and answer archive, and recommended nutrition reading materials.

Diet and Nutrition after Your Bone Marrow Transplant
Recommendations from the Mayo Clinic regarding nutrition and diet changes that may be needed after transplant.

Healthy Cooking for People Touched by Cancer
Cook for Your LIFE aims to improve the health of cancer patients and survivors by giving them practical knowledge, tools, and inspiration to cook their way through treatment and into a healthy survivorship.

Complementary Therapies

Memorial Sloan-Kettering Integrative Medicine Service
Offers integrative medicine services as complement mainstream cancer care. Includes touch therapy, mind-body therapy, acupuncture, creative therapy, and nutrition counseling, as well as strength and relaxation exercise programs. Services are available to anyone receiving cancer care, whether at Memorial Sloan-Kettering or elsewhere.

About Herbs, Botanicals & Other Products
From Memorial Sloan-Kettering’s Integrative Medicine Service, provides evidence-based information about herbs, botanicals, supplements, and more.

Fertility

MyOncofertility.org
An education resource from the Oncofertility Consortium for patients (and their parents and partners) whose fertility may have or will be impaired by treatment. Provides answers to cancer-related fertility questions, guidance for talking to physicians about fertility concerns, and assistance in finding a local fertility preservation specialist.

Fertile Hope
Fertile Hope is a LIVESTRONG initiative dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. Connects patients with educational resources, financial assistance, and searchable database of doctors and services.

Intimacy and Sexuality

Life After Cancer: Effects on Intimacy
From the National Institutes of Health “Senior Health” initiative and aimed at survivors who are now 65 years or older. Discusses physical and emotional issues as well as possible treatments.

Sexual Health: FAQs
Answers from Memorial Sloan-Kettering Cancer Center to frequently asked questions about how sexuality can be affected by cancer and treatment. Divided into sections for survivors in general, men specifically, and women specifically.

Financial Assistance

National Financial Resource Directory
Tool from the Patient Advocate BMCF to help sort resources for a broad range of needs including housing, utilities, food, transportation to medical treatment, home health care, medical devices, and pharmaceutical agents.

Cancer Financial Assistance Coalition (CFAC)
CFAC is a coalition of financial assistance organizations with a database that can be searched by diagnosis or type of assistance.

Survivorship A to Z
An independent not-for-profit corporation consisting of a small but dedicated staff, volunteer experts, volunteers living after a cancer diagnosis, patient advocates, and caregivers. Provides information covering the financial, legal, and practical aspects of living through all stages of life after a diagnosis.

Financial help for patients & families
List of organizations that offer financial assistance to people affected by cancer, or that have links to organizations that may provide such help. Categories include, but not limited to, basic living expenses, child care, equipment, scholarships, housing, medical care, and more.

Surviving And Moving Forward: The SAMFund for Young Adult Survivors of Cancer
The SAMFund provides grants and scholarships to young adult survivors to help supplement money that was lost during treatment. The grants and scholarships help pay for transitional issues such as education, living, job search and lingering medical expenses.

Work and Employment

Cancer and Careers
Includes information on a variety of topics related to returning to work once treatment is complete or nearing completion, job hunting after treatment,  and legal rights, protections, and benefits.

Back to Work Issues: Know Your Rights
Frequently asked questions answered by the Fred Hutchinson Cancer Research Center’s Long-Term Follow-Up (LTFU) program. Topics include federal and state laws to protect survivors’ employment rights, dealing with employment gaps on resumes, and organizations to help with employment issues after transplant.

Family, Friends, and Caregivers of Survivors

Imerman Angels
Pairs cancer fighters and survivors with mentors who have fought and survived the same types of cancer. Also connects spouses, parents, children and other family and friends of fighters with other caregivers and survivors.

Teens and Young Adult Survivors

Adolescent Survivorship Issues
Frequently asked questions answered by the Fred Hutchinson Cancer Research Center’s Long-Term Follow-Up (LTFU) program. Topics include adolescents’ special needs after transplant, how adolescents are affected by transplants differently from adults and young children, and dealing with school-related issues.

Planet Cancer
A LIVESTRONG initiative dedicated to connecting young adults with each other, to empowering them, and to helping them access support and resources. Includes an online community of young adults who have been affected by cancer and weekend retreat programs.

Jen’s Thank You Alliance
Assists young adult cancer survivors ages 15-39 in finding financial, inspirational and educational resources needed from initial diagnosis, through continuing treatment & remission periods.

Surviving And Moving Forward: The SAMFund for Young Adult Survivors of Cancer
The SAMFund seeks to provide the most extensive support possible to help young adult survivors move forward with their lives after cancer. Through direct financial assistance, free online webinars, and a Survivors’ Network program that provides opportunities to connect YAs to others in their area, The SAMFund helps young adults get back on their feet and achieve their goals.

Seniors and Older Adult Survivors

Life After Cancer
From the National Institutes of Health “Senior Health” initiative, information aimed at survivors who are now 65 years or older. Topics include follow-up care, impact on intimacy, fatigue, and memory problems.

Connecting with Other Survivors

National Cancer Survivor Day
Annual celebration of life, traditionally observed on the first Sunday in June. Participants unite in a symbolic event to demonstrate that life after a cancer diagnosis can be meaningful and productive.

Voices of Survivors BMCF
Devoted to exploring what “Survivorship” means to the individual “Survivor,” through formats, including video and written word. Founded by a documentary filmmaker and survivor who saw a need to put a human face and voice to this word that means so much to so many people.

Picture Your Life After Cancer
An online feature by The New York Times that asked patients “How did your life change after cancer?” Search the gallery for photos and insights from patients who have completed treatment and submit your own contribution.

Imerman Angels
Pairs cancer fighters and survivors with mentors who have fought and survived the same types of cancer. Also connects spouses, parents, children and other family and friends of fighters with other caregivers and survivors.

I Had Cancer
Created by a cancer survivor, I Had Cancer is a social support network with the mission of helping people deal more effectively with life before, during and after cancer. It allows cancer survivors and fighters and their supporters to connect with one another and share their stories and experience.