Resources

SCREENING

While there is still a psychological cost to learning that you carry a p53 mutation, many find benefit, both physically and psychologically, to screening. Screening allows for cancer to be found earlier in more treatable stages, which is empowering. There is also the psychological reassurance that come when nothing remarkable is found.

Consider taking the following screening guidelines comparison to your local doctor or to submit in an appeal to your insurance company if you find that screening is not covered. Your genetic counselor might want to customize the screening recommendations, taking into account your family cancer history.

The Toronto Protocol

The Toronto Protocol was the first screening recommendation proposed for those with LFS and is the most widely used to date. Dr. David Malkin and his team at the Hospital for Sick Kids in Toronto tailored this regimen to detect a wide range of cancers while limiting exposure to ionizing radiation. Although the initial study had a small number of participants, it showed significantly better survival outcomes for those who selected to do screening over those who did not. In the US, many doctors use this as a screening guide for LFS, but getting insurance to cover scans is sometimes a challenge.

Toronto Protocol Journals!

Living LFS member Lisa Wickens was kind enough to make these awesome journals to help you keep track of your scans, dates, questions and everything else to do with your Toronto Protocol screening. Click the images to download the PDFs. Thank you Lisa!

Womens Elephant Toronto Protocol Journal by Lisa Wickens
Women's Elephant Journal
Good Vibes Womens Toronto Protocol Journal by Lisa Wickens
Good Vibes Women's Journal
Women's Elephant 2 Toronto Protocol Journal by Lisa Wickens
Elephant Journal
Mens Toronto Protocol Journal by Lisa Wickens
Men's Elephant Journal
Minecraft Toronto Protocol Journal by Lisa Wickens
Minecraft Journal
Cupcake Toronto Protocol Journal by Lisa Wickens
Cupcake Journal
Hearts and Elephants Toronto Protocol Journal by Lisa Wickens
Hearts Elephant Journal

LEAD (Li-Fraumeni Education And Early Detection)

MD Anderson recently announced the beginning of a clinic for patients with Li-Fraumeni Syndrome at their cancer center in Houston, Texas. The Program is called LEAD- Li-Fraumeni Syndrome Education And Early Detection. Due the risk of many cancers associated with LFS, the LEAD program offers a comprehensive screening plan to detect cancers as early as possible. The LEAD has an adult department (age 21 and above) as well as separate department and guidelines for children and adolescents (under the age 21).

You may be eligible for LEAD if you have a confirmed diagnosis of Li-Fraumeni Syndrome.

For Questions About LEAD Contact: Michelle Jackson

To become part of the LEAD clinic, a person will have to become a patient at MD Anderson and this can be done by calling their New Patient Line at (713) 792-5410 and ask to be seen at the LFS clinic. If the person has not been tested for a germline TP53 mutation, but is at risk (for example if a family member is positive) they can have genetic counseling and get genetic testing through the LEAD clinic. If the person tests positive for the mutation, they will then be followed by the LEAD clinic and the screening guidelines recommended for them.

MD Anderson NEW PATIENT LINE (713) 792-5410

Click here to learn more about MD Anderson’s LEAD study clinic.

CLINICAL TRIALS & STUDIES

Clinical trials are research studies that people can participate in. It is a way to contribute to medical knowledge while offering the opportunity to receive cutting edge care. Each trial has a unique set of risks and benefits. Federal regulations are in place to ensure the ethics and safety of clinical trials. Listed below are a few LFS specific studies. If you are interested in participating or feel a clinical trial is right for you, be sure to discuss it with your doctor.
** 11/19/15 Update: The Metformin Study is looking for a few more participants! Goals of the study are to determine tolerability of metformin in patients with LFS and if daily metformin has any effect on circulating IGF-1, insulin and IGFBP3 levels. chemoprevention. For more information, visit the Living LFS blog post about the Metformin Study. Contact: Farzana L Walcott, M.D. walcottfl@mail.nih.gov (240) 276-7661 **

National Cancer Institute (NCI) – National Institutes of Health (NIH)

The goal of the LFS Study is to evaluate those with known or suspected TP53 mutations and their families. They do this by collecting data, blood and tumor samples to better understand how cancers develop. Includes Physical exam, imaging studies and laboratory tests. Ongoing monitoring and developing effective prevention strategies. Offering risk assessment, counseling, testing and evaluating the psychosocial impact on members of LFS families. Developing evidence based information on how best to care for people affected with or at risk for LFS cancers.

Contact:
stephaniesteinbart@westat.com
1-800-518-8474

For more information, visit the Living LFS blog post about this study.

Goals of the study are to determine tolerability of metformin in patients with LFS and if daily metformin has any effect on circulating IGF-1, insulin and IGFBP3 levels. chemoprevention.

Contact:
Christina M. Annunziata, M.D.
ca180n@nih.gov
301-402-7189

For more information, visit the Living LFS blog post about the Metformin Study.

To evaluate and quantify cumulative cancer risk in LFS and LFL individuals, develop a cancer screening program. identify genetic and environmental factors that modify cancer risk, find risk reducing options, evaluate the psychological and social effects of LFS on individuals and family members, to create a biospecimen repository of LFS related materials for research.

Contact:
Renee C Bremer
bremerrc@mail.nih.gov
(240) 276-7266

Contact:
Sharon A Savage, M.D.
savagesh@mail.nih.gov
(240) 276-7241

To examine the metabolic and biological factors in people with Li-Fraumeni Syndrome.

Dana-Farber

The purpose of the registry study is to collect information on personal cancer history, family history, and bank specimens from patients and family members with Li-Fraumeni syndrome. The registry aims to create a repository of data and specimens that are made available for researchers who are working to further understand the syndrome and to develop prevention, screening, and treatment recommendations. In addition, the registry provides participants the option to be notified about future research studies that may be of interest to them and their families.

Click here for a printable document about the LFS Registry from Dana-Farber

Contact:
Callie Nibecker
callie_nibecker@dfci.harvard.edu
617-632-4795

This study aims to test a relatively new medical technology called Whole Body Magnetic Resonance Imaging (MRI), in patients with these syndromes, to see if cancers can be detected at an early stage which may, in turn, allow for more effective treatment. We have chosen Whole Body MRI scanning because this scan allows doctors to look at the entire body in one examination. In addition, by using this technology, participants are not exposed to radiation, which is of particular importance for individuals who have a higher cancer risk due to a diagnosis of LFS. The Whole Body MRI study is currently closed for enrollment of adults. New pediatric patients (<18 years) are still being accepted for enrollment into the study.

Click here for a printable document about LFS from Dana-Farber

Contact:
Callie Nibecker
callie_nibecker@dfci.harvard.edu
617-632-4795

MD Anderson Cancer Center

For more information, visit the Living LFS blog post about the LEAD Study Group.

LFS Study- P90-001

The overall goal of this genetic research study is to find out why some people develop cancers and tumors, why some families have more cancers than others, and whether certain genes or regions of DNA (the genetic material of cells) affect a person’s risk of getting cancer.

Transition from Research to Disclosure Study-BS99-038

To provide research families with comprehensive genetic services: education, counseling and the option of genetic testing and test disclosure. To evaluate the study participants knowledge and impact of counseling and testing on their psychological adjustment to test results.

Transition from Research to Disclosure Study-BS99-038

To provide research families with comprehensive genetic services: education, counseling and the option of genetic testing and test disclosure. To evaluate the study participants knowledge and impact of counseling and testing on their psychological adjustment to test results

Memorial Sloan Kettering Cancer Center

PROMPT is an online research registry for patients and families who have undergone multiplex genetic testing and were found to have a genetic variation which may be linked to an increased risk of having cancer. Using a secure online information portal hosted by PatientCrossroads, participants in PROMPT can provide information by completing questionnaires about their personal and family health histories. PROMPT can also be used as a way for participants to receive updates from physicians and researchers regarding their genetic information.

Contact: medprompt@mskcc.org

For more information, visit the Living LFS blog post about this study and a conversation with Dr. Robson!

Huntsman Cancer Center

Contact:
Sara Johnson
cgs@hci.utah.edu
801-585-7343

Australian Sarcoma Group

For more information, visit the Living LFS blog post about this study.

Resources Recommended by the Living LFS Community

LFS General Information

Genetics Home Reference
Information on LFS, testing, and screening. This site also offers links to educational resource.

MD Anderson LFS Fact Sheet
Printable document for your reference.

Dana Farber Cancer Genetics
Dana Farber Cancer Genetics Program for LFS.

LFS Conference at NIH 2010
A video of the Conference held at the NIH about LFS, p53 mutations, genetic testing, screening and future goals.

The George Pantziarka TP53 Trust
The George Pantziarka TP53 Trust helps families with Li Fraumeni Syndrome and other TP53 disorders.

LFSA
LFS Association provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome.

Pediatrics

Make-A-Wish America
Make-A-Wish® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories.

The National Children’s Cancer Society
The National Children’s Cancer Society (NCCS) provides emotional, financial and educational support to children with cancer, their families and survivors.

The National Children’s Cancer Society
The National Children’s Cancer Society (NCCS) provides emotional, financial and educational support to children with cancer, their families and survivors.

Alex’s Lemonade Stand Foundation
ALSF encourages and empower others, especially children, to get involved and make a difference for children with cancer. ALSF raises money and awareness of childhood cancer causes, primarily research into new treatments and cures.

Flashes of Hope
Flashes of Hope raises funds to accelerate a cure for children’s cancer while honoring the unique life and memories of every child fighting cancer.

Robot Music: A Story for Kids with Li-Fraumeni Syndrome and Other Cancer Predispositions
This children’s book by Amy Peasgood is a lighthearted introduction to Li-Fraumeni Syndrome (LFS). Reading this book with young children creates a safe space for questions and conversation. All profits from the sale of Robot Music will be donated towards LFS research and initiatives that support the LFS community.

Financial

Cancer Financial Assistance Coalition
CFAC is a coalition of organizations helping cancer patients manage their financial challenges.

American Cancer Society
Health insurance and financial assistance information for cancer patients.

Sparrow Clubs USA
Sparrow Clubs USA exists to set the stage for simple, yet heroic acts of kindness in schools and youth culture, through the concept of empowering kids to help kids in medical need.  Sparrow Clubs USA is primarily a Pacific Northwest charity, serving in the states of Oregon and Washington.

Alternative Medicine

Memorial Sloan Kettering Cancer Center
Integrative Medicine : Herbs

Young Adults

The SAMFund
The SAMFund supports young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. Through direct financial assistance and free online support and education, The SAMFund helps young adults move forward towards their personal, professional, and academic goals.

First Decents
First Descents provides life-changing outdoor adventures for young adults (age 18-39) impacted by cancer.

Young Survival Coalition
Young women facing breast cancer together.

Genome Generation
Genome Generation encourages conversation with young adults, from all over the world, to understand their family history.

Travel

Ronald McDonald House
The mission of Ronald McDonald House Charities (RMHC) is to create, find and support programs that directly improve the health and well being of children.

American Cancer Society Hope Lodge
Hope Lodge offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city.

Joe’s House
Joe’s House is a nonprofit organization providing an online nation-wide list of places to stay to assist cancer patients and their families find lodging near treatment centers.

National Patient Travel Center
The National Patient Travel Center provides information about all forms of charitable, long-distance medically-related transportation.

Corporate Angel Network
Corporate Angel Network helps cancer patients access the best possible treatment for their specific type of cancer by arranging free travel to treatment across the country using empty seats on corporate jets.

Air Charity Network
Air Charity Network coordinates free air transportation for children and adults with medical or compelling humanitarian needs.

Healthcare Hospitatlity Network, Inc
HHN is a nationwide professional association of nonprofit organizations that provide lodging and support services to patients, families, and their loved ones who are receiving medical treatment far from their home communities.

Southwest Airlines
Through the Southwest Airlines Medical Transportation Grant Program (MTGP) Southwest provides complimentary, round trip tickets to nonprofit hospitals and medical transportation organizations. Southwest allows participating nonprofit hospitals and medical transportation nonprofit organizations the freedom to determine how to distribute the tickets to patients and/or caregivers.

Support

American Psychosocial Oncology Society
APOS’s Helpline is a national resource to help people with cancer and their caregivers find emotional support in their own communities.

APOS’ Toll-Free HELPLINE – 1-866-276-7443 (1-866-APOS-4-HELP)

Caring Bridge
CaringBridge transforms your personal connections into support when you need it most. By creating a free CaringBridge website, people in a time of need can share updates, photos and videos, connecting with friends and family who care and want to help.

Lotsa Helping Hands
Create a care community when you need it most.  With the Help Calendar, you can post requests for support – things like meals for the family, rides to medical appointments, or just stopping by to visit.

Maggie’s Centre
Maggie’s Centres are available to anyone with any type of cancer and their families and friends, offering the practical, emotional and social support that people with cancer need.  Centres are located in the United Kingdom only

SuperSibs
SuperSibs Comfort and Care program is free and provides mailings to children ages 4-18 who live in the United States and have (or had) a sibling with cancer. SuperSibs also offers age appropriate bereavement services.