GIST Support Wiki

Main Page
Welcome to our GIST Support Wiki!

Our wiki is a collection of useful, practical strategies of GIST patients and caregivers in living with GIST cancer, as well as comments about participation in clinical trials with different drugs in development for gastrointestinal stromal tumor treatment. This wiki is provided by the nonprofit organization GIST Support International. We are an all-volunteer community of over 1500 people interested in gastrointestinal stromal tumor (GIST) as patients, caregivers, medical personnel, and friends. Our home website has additional detailed information about gastrointestinal stromal tumor (GIST cancer) and its treatment. For more services offered by GSI, see our GIST Support International Links section.

Please read our About page and Disclaimer and understand that the information found in this wiki is not provided by medical experts. We hope that you find the content useful and help improve it by making your own edits (see the Wiki 101 page for basic instructions). After all, it is a community project run by individuals like you!


How to Find What You Need on the GIST Support Wiki

You can find information related to your needs by either:

  • using the search box at the top right to search for a key word, or
  • taking a look at the contents outline below to find pages of interest, or
  • clicking on "All pages" in the wiki header above to see an alphabetized list of all pages

Adding to the Wiki

We welcome GIST patients and caregivers to add your own tips and experiences to our wiki.

  • To be authorized to add to the wiki, e-mail You must identify yourself and provide your e-mail address in order to make contributions to our wiki. Unfortunately this is necessary to discourage spammers and advertisers.
  • First time wiki user?
  • Share your recommendations on how to improve the wiki at the Suggestion Box or volunteer to become one of our Wiki Helpers.

Contents Outline

Click on any BLUE heading below to open subpages.

Living With GIST Cancer

Anatomy Learning Links

Book Recommendations from GSI Listmates

Caregiver Support

Coping -- the Mental Challenge of Cancer Diagnosis

Telling Your Young Children you have GIST

Films and TV Shows About GIST

Integrative Medicine Using complementary approaches for holistic healing

Pediatric and Wild-type GIST Latest news and information

Exon 9 GIST Exon 9er's Experiences

Staying organized through a Health Care Crisis Managing a Home, Physical Clutter, Paper Chaos, Mind Clutter, Technical Clutter, The Notebook, Using your computer, The flash drive

Symptoms and Relief Strategies Strategies for coping with symptoms of having GIST, surgery or side effects of medications: from A to Z (acid reflux to weight loss) there are separate pages on a wide variety of topics.

Miscellaneous tips

Other Websites with GIST information

Surgery and Recovery

Surgeries for GIST

Getting Ready for Surgery Tips to make things easier

Living with Your GI Tract Post-Surgery Coping with the changes in your anatomy

Returning Home Post Surgery


Unused Medication

GIST drugs vs Traditonal Chemo drugs

Mutation Status Predicts Probability of Recurrence

Clinical Trial Drugs Patients participating in trials tell their experiences.

Clinical Trials - What you need to know a series of short tutorials explaining the process of choosing a clinical trial and the factors involved, authored by medical personnel.

Compassionate Use of a Drug

Drug Interactions

Pharmaceutical Company Contacts Contact a drug company regarding a particular drug

MAX Foundation Asia Pacific Assistance

Australian Drug Trials website for Australian Cancer patients

Non US Drug Trials - websites for those outside the US (not just GIST)

GIST Drug Trials outside the US - out of the US drug trials for GIST

Side Effects Also see section Symptom Relief



High blood pressure and Sutent


Generic Gleevec

Systemic Therapy Update of BC Cancer Agency for detailed information on Teva (Generic Imatinib) which was introduced on October 1, 2013






Regorafenib for Colon Cancer and GIST

ARQ736 Pan-RAF Trial

AT13387 HSP90 trial at OHSU

Online tutorial of HSP90

New Trial: Linsitinib in Treating Younger and Adult Patients With Gastrointestinal Stromal Tumors



BYL719 plus Gleevec trial

ASCO 6/2/14- NEW TRIAL alternates Sutent and Stivarga

TRIAL: A randomised phase II trial of imatinib alternating with regorafenib compared to imatinib

Doctors, Hospitals, and Medical Tests / Labs / Scans

CT Scans

My Doctor, My Hero - Choosing one that you can have confidence in

Doctors and Clinics for GIST

Doctors answer Members' Questions

PET Scans



Preparing for Needle Sticks for Blood Draws and IVs

Places to stay near major GIST centers

Tumor Tests

Hospital Ratings and Comparisons

International Mutational Testing Labs

Getting Your Medical Records - HIPPA rules

Insurance Issues and Getting Financial Assistance

Insurance Issues

Getting Financial Assistance

Legal Advice - Cancer Legal Resource Center

Social Security Disability

Medicare, Supplements and Prescription Coverage

Marina Sez

Marina Symcox, PhD, is a 15+ -year GIST survivor who is remarkably talented in clearly communicating difficult medical concepts. This page includes her explanations of numerous cancer topics.

Member Reports from GIST Conferences

GIST Support International members have summarized GIST information here from cancer conferences.

People and Events

GIST Patient and Caregiver Get Togethers

GIST Support International Photo Gallery

Familial GIST

Papers and Abstracts concerning GIST

GIST Support International Links

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  • GSI Website - Our GIST Support International community website with comprehensive information about gastrointestinal stromal tumor (GIST)
  • GSI JOIN link - How to join the email listserv to communicate with others who are dealing with GIST, or change your subscription options.
  • E-mail archives - the Archives of our email list where you can search for topics previously discussed (accessible only to list members).
  • Educational Materials - Request a free GIST brochure (or a supply for your doctor's office), request a DVD featuring GIST patients, download a booklet, access books about GIST.