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 donna@gistsupport.org 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
Book Recommendations from GSI Listmates
Coping -- the Mental Challenge of Cancer Diagnosis
Telling Your Young Children you have 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.
Other Websites with GIST information
Surgery and Recovery
Getting Ready for Surgery Tips to make things easier
Living with Your GI Tract Post-Surgery Coping with the changes in your anatomy
Drugs
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.
Pharmaceutical Company Contacts Contact a drug company regarding a particular drug
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
Regorafenib for Colon Cancer and GIST
New Trial: Linsitinib in Treating Younger and Adult Patients With Gastrointestinal Stromal Tumors
Doctors, Hospitals, and Medical Tests / Labs / Scans
My Doctor, My Hero - Choosing one that you can have confidence in
Doctors answer Members' Questions
Preparing for Needle Sticks for Blood Draws and IVs
Places to stay near major GIST centers
Hospital Ratings and Comparisons
International Mutational Testing Labs
Getting Your Medical Records - HIPPA rules
Insurance Issues and Getting Financial Assistance
Legal Advice - Cancer Legal Resource Center
Medicare, Supplements and Prescription Coverage
Marina Sez
Marina Symcox, PhD, is a 10-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
Papers and Abstracts concerning GIST
GIST Support International Links
- 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.
- GSI JOIN Pediatric & Carney Triad listserv link - How to join the email listserv for pediatric patients, their parents, and patients with wild-type GIST who developed the disease by about age 30.
- GSI's PHONE PAL Program - How to talk directly by telephone to another GIST patient or Caregiver.
- 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.
- Questions to Ask your Doctor if you are a new GIST patient.
- Voices of GIST essays and stories by GIST patients.