This page shows links to particularly useful organizations and websites relevant to gastrointestinal stromal tumor (GIST cancer).
The NCCN is a group of comprehensive cancer centers which produces useful guidelines for diagnosis and treatment of various cancers. Specific to gastrointestinal stromal tumor (GIST cancer) see the following downloadable documents, which you can access after you complete a free registration process.
- NCCN Task Force Report: Optimal Management of Patients with GIST -- Update of the NCCN Clinical Practice Guidelines. This is a long (40-page pdf) and detailed guidelines booklet written by a panel of experts. It contains plenty of useful information to guide oncologists in treatment of GIST, plus details such as drug interactions and side effects of special concern to patients.
- Soft Tissue Sarcoma Guidelines This document, updated at least annually, includes flow charts for GIST diagnosis and treatment. To navigate to this document on the NCCN site, look under "NCCN Clinical Practice Guidelines in Oncology."
This is the patient-oriented website of the NCCN (see above).
This site contains useful information for patients and caregivers on living with cancer during and after treatment. It includes information about making treatment decisions, paying for treatment, and life beyond cancer, as well as current news about cancer-related issues and events.
This multidisciplinary research and treatment collaboration at the National Insitutes of Health is geared to understand the basis for wildtype GIST in patients of all ages, as well as pediatric GIST (defined as diagnosed by age 18). Their website is quite informative and includes free access to many medical papers about GIST.
The Max Foundation is a US-based international non-profit dedicated to improving the lives of people living with blood cancer and rare cancers worldwide. The organization focuses attention on assisting disadvantaged populations in developing countries and elsewhere, including the US. The Max Foundation’s International Patient Helpline provides free services of advocacy, emotional support, informational referrals and help finding emergency funding. The MAX Foundation administers Novartis’ Glivec International Patient Assistant Program (GIPAP), plus other local access programs, and assists with treatment access on a case-by-case basis. Through a highly dedicated team of US-based and local advocates based in targeted countries, families receive personalized support services. Each year The Max Foundation provides free services to over 16,000 families in more than 100 countries. For questions you can e-mail email@example.com
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Sutent.com and Sutent Patient Call Center
This Pfizer website provides information about use of Sutent for GIST. Pfizer also provides an "In Touch" program for patients taking Sutent.
You can call the SUTENT Patient Call Center at 1-877-5-SUTENT with questions. You can reach the SUTENT Patient Call Center Monday through Friday, 8 AM to 7 PM CT at 1-877-5-SUTENT (1-877-578-8368).
1-877-744-5675, then choose option 1
Sponsored by Pfizer, First RESOURCE assists patients in obtaining access to Sutent through guidance in obtaining insurance reimbursement, appealing denied insurance claims, and financial assistance for eligible patients. International patients should call the phone number, then ask to speak to a supervisor or to the program manager, who can forward the request to the appropriate contact for your country.
This Novartis website provides information about use of Gleevec for GIST. Financial assistance for Gleevec for non-USA patients is handled through the MAX Foundation (see link above on this page). In the USA the Novartis Oncology Reimbursement Hotline (1-800-282-7630) will be able to provide assistance with the reimbursement process for Novartis products.
This Novartis website includes illustrated descriptions of the diagnosis and treatment of GIST, as well as slide shows narrated by physicians familiar with GIST.
My GIST Circle is a free support program from Novartis for people who have been diagnosed with Kit Positive Gastrointestinal Stromal Tumor. The My GIST Circle Co-Pay Assistance Program provides financial aid to patients who are prescribed GLEEVEC® to treat KIT+ GISTs.
This assistance program helps patients who have been prescribed Nexavar to access medication by identifying specialty pharmacies and addressing insurance and reimbursement concerns. Contact a REACH Program Counselor by calling 1.866.NEXAVAR or 1.87.REACH.4.IT (1.877.322.4448) Monday through Friday from 9 AM to 8 PM EST. Although the Nexavar website information is directed toward the FDA-approved conditions for whch it is prescribed, Bayer has told us they will help GIST patients who are prescribed Nexavar off-label. Your physician can help you complete the application at this link. Bayer also has a helpline for patients taking Nexavar to ask questions; it's called NexConnect. It's a 24 hour 7 day a week hotline staffed by oncology nurses. The number is 1-866-Nexavar ( 1 866-639-2827).
The free Clinical Trial Matching Service is made available to GIST Support International (GSI) members and visitors through a collaboration with EmergingMed. This service is designed to be a simple, confidential way to obtain information about clinical trials pertaining to Gastrointestinal Stromal Tumors.
This is GSI's page about clinical trials.
The mission of the GIST Cancer Awareness Foundation is to provide informational support to GIST patients and their families through established community support groups; increase public awareness of GIST using private and public media tools; and to raise funds to award research grants for the expanded investigation of GIST.
The Liddy Shriver Sarcoma Initiative at www.sarcomahelp.org undertakes activities that help improve the quality of life for people dealing with sarcoma. Central to this mission are our goals of increasing public awareness of sarcoma and the lack of young adults in cancer-based clinical trials and raising funds for sarcoma-related research. (See the ESUN electronic newsletter archive on this site for articles about sarcomas.)
Cancer.net provides oncologist-approved cancer information from the American Society of Clinical Oncology, including monthly Q&A topics. This site replaced ASCO's previous patient-oriented site "People Living with Cancer."
This site is a guide to medical tests: how and why they are performed, and what the results mean. It is sponsored by a large number of professional associations as a public service.
The AICR is a nonprofit organization providing scientifically-based, practical information about diet and nutrition and cancer.
This page of external links we have assembled covers several categories...