Ed Everest's Guide to the World's Best Cancer Websites
The home page address is www.bestcancersites.comBEST GASTROINTESTINAL STROMAL TUMORS (GIST) WEBSITES
A SOFT TISSUE SARCOMA
The address of this page is www.bestcancersites.com/GISTI have not had time yet (9th September 2006) to do a thorough search of the internet for good GIST sites. But the ones below should provide you with a sound base to work from. And for those living in Australia there is information about Australian websites here.
Two organisations devoted to GIST are the Life Raft Group at www.liferaftgroup.org, and GIST Support International at www.gistsupport.org. You will find plenty of information on their websites about GIST and its diagnosis and treatments and related matters, and I recommend you visit both websites and read the information relevant to your situation on both sites.
GIST Support International runs a mailing list you can join with over 650 subscribers as at 11th May 2006. To join the list, look for the link "Join" on their home page.
Life Raft runs a mailing list called STI571-GIST (Gleevec - Glivec) and GIST (Gastro Intestinal Stromal) with 520 subscribers as at 12th September 2006. To join the list go to this webpage www.liferaftgroup.org/about_join.html. The list is restricted to only GIST patients and caregivers.Life Raft has an associated website called the Global GIST Network at www.globalgist.org where you may find some information specific to your particular country.
In the United Kingdom there is a support group called Gist Support UK with a website at www.gistsupport.co.uk.
If you can read German you could try this website www.daslebenshaus.org (I haven't checked it out).
The American Cancer Society, a voluntary organisation, runs one of the most comprehensive websites on cancer and cancer-related matters on the net. Their address is www.cancer.org. There's information about GIST on their website but because it's such a large site you need to search it out. Find and click on the link "Choose a cancer topic" on their home page and choose Gastrointestinal Stromal Tumors from the list that displays, and click on Go. You could also look for a forum to participate in by going to their original forum index page at www.acscsn.org/Forum/Discussion/summary.html or the index page to their new forums (they are currently modifying their forums).The American Cancer Society's website has many other resources too for those involved with cancer so it's well worth browsing their site for additional information and support that may be relevant to your situation.
Another good source of information is the National Cancer Institute (USA) at www.cancer.gov. To find information directly relevant to GIST, go to their home page, find the heading “Types of Cancer” and click on the link “A to Z List of Cancers” and look for "Soft Tissue Sarcoma, Adult" and "Soft Tissue Sarcoma, Childhood".
The National Comprehensive Cancer Network (NCCN) is “an alliance of 19 of the world's leading cancer centers, ... an authoritative source of information to help patients and health professionals make informed decisions about cancer care. Through the collective expertise of its member institutions, the NCCN develops, updates, and disseminates a complete library of clinical practice guidelines. These guidelines are the standard for clinical policy in oncology” - (quoted from their website). You may be able to find a set of guidelines relevant to GIST by going to this webpage www.nccn.org/professionals/physician_gls/default.asp
Other websites you may find valuable
If you want to delve deeper into any aspect of cancer, a good source of information is Medlineplus at www.medlineplus.gov. It's a service of the U.S. National Library of Medicine and the National Institute of Health and it’s a big well-organised and easily searchable site. The link to the section on cancers is www.nlm.nih.gov/medlineplus/cancers.html.
Cancercare is a large USA-based organisation "that provides free, professional support services for anyone affected by cancer." On their website at www.cancercare.org you can find some information resources, advice on such matters as financial assistance, and counseling services (online, telephone and face-to-face). There are also some online support groups or forums.
The website RxList at www.rxlist.com - self-described as “The Internet Drug Index providing fast, reliable information to both the consumer and the medical professional” - has information about hundreds of medicinal drugs and also active forums or discussion boards on the more popular drugs as well as forums for discussing less popular drugs and alternative therapies. The link to their forums index page is www.rxlist.com/rxboard.htm.
NORD - the National Organisation for Rare Disorders - on their website at www.rarediseases.org has a database of rare disorders including many rare cancers. The database gives a list of alternative names for each disorder, some basic information about the disorder, and a list of organisations related to that disorder.
If you have concerns about fertility in relation to cancer and its treatment, go to this page www.bestcancersites.com/fertility for links to websites with information and support on fertility issues (and you can use your back button to return to this page).
There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema (and you can use your back button to return here).
A good website for finding clinical trials relating to any type of cancer is the USA Government’s National Cancer Institute site at www.cancer.gov - go to their home page and click on the link Clinical Trials, or click on this direct link www.cancer.gov/clinicaltrials.
There’s another USA Government website called ClinicalTrials.gov at www.clinicaltrials.gov where you can search for trials. “ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions” and “ClinicalTrials.gov currently contains approximately 12,600 clinical studies sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted in all 50 States and in over 100 countries. ClinicalTrials.gov receives over 4 million page views per month and hosts approximately 17,000 visitors daily.”
I suggest starting your search for clinical trials with the National Cancer Institute site at www.cancer.gov and then trying the ClinicalTrials.gov site. I don't know if ClinicalTrials.gov includes the same database as the NCI site but it doesn’t use the same search form so it might turn up something different anyway. Both sites include trials around the world as well as those in the USA.
You could also try the “American Cancer Society /EmergingMed Clinical Trials Matching Service ... This free Clinical Trial Matching and Referral Service is made available to American Cancer Society visitors through a collaboration with EmergingMed. ... Fill out one questionnaire and within seconds you'll know if your profile matches any clinical trials in our system. The EmergingMed database contains more than 3,000 clinical trials for treatment, prevention and early detection of cancer.” Look for the link to clinical trials on the home page of the American Cancer Society or try this direct link http://clinicaltrials.cancer.org .
There are links to nutrition and excercise guidelines on this webpage nutrition and excercise guidelines.
For anyone considering trying an alternative treatment for cancer (one that is not mainstream medicine and scientifically demonstrated to be safe and beneficial) the website Quackwatch has a very good section on their site called “A Special Message for Cancer Patients Seeking "Alternative" Treatments”. It will help you decide whether an alternative treatment you are considering is safe and might be beneficial in some way, or whether it might be unsafe and/or fraudulent. The direct link is www.quackwatch.org/00AboutQuackwatch/altseek.html or you can find the link on their home page at www.quackwatch.org.
The American Cancer Society website has a valuable section called "Complementary and Alternative Therapies". It's buried deep in their website and difficult to find - there's no link to it from their home page. Try this direct link www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO or else put the word alternative into the search window on the home page and look for a link to the section in the search results. If you're thinking of trying a specific alternative or complimentary treatment you've come across on the internet or elsewhere you may find information about it in this section.
Another website that discusses the subject of alternative treatments in some detail is the website of the National Center for Complementary and Alternative Medicine at www.nccam.nih.gov.
The American Cancer Society has a very good information page giving advice on how to use the internet for finding information on cancer, and how to determine if that information is reliable. The direct link to it is Cancer Information on the Internet.
More suggestions please
If you know of any other good gastrointestinal stromal tumor websites large or small you would like to see added to this page, please send me an email at everest@bestcancersites.com
Ed Everest, Adelaide, Australia
Webpage updated 9th September 2006
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Firstly a reminder about the mailing lists run by the GIST Support International and the Life Raft Group. GIST Support International runs a mailing list you can join with over 650 subscribers as at 11th May 2006. To join the list, look for the link "Join" on their home page (www.gistsupport.org).
Australian GIST Websites
The Life Raft Group run a mailing list called STI571-GIST (Gleevec - Glivec) and GIST (Gastro Intestinal Stromal) - 475 subscribers as at 10th February 2006 - hosted by the Association of Cancer Online Resources (ACOR). To find the list go to the ACOR home page and click on 'Mailing Lists Center' and look for STI571-GIST in the alphabetical list, or try this direct link http://listserv.acor.org/archives/sti571-gist.html.
There do not appear to be any websites based in Australia devoted to GIST.
There are annotated links to Australian general cancer websites on this webpage Australian general cancer websites (it opens in a new window). Please do check it out - you'll find websites listed there with a wide variety of information relevant to Australia (including lists of support groups and treatment centres) that you won't find on the websites described above.More suggestions please
I have not had time yet (February 10th 2006) to do a thorough search of the internet for good GIST sites. If you know of any other good gastrointestinal stromal tumor websites large or small you would like to see added to this page, please send me an email at everest@bestcancersites.com.
Ed Everest, Adelaide, Australia
Webpage updated 9th September 2006
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