CARCINOID INFORMATION
We are very fortunate to be living in a time when access to information
in this 'technology age' is so readily available. There are now many,
many website references online for Carcinoid . . . but not all are
as up to date as we would like.
The following few website links will prove helpful and provide
a good introduction to those seeking more information on Carcinoid
and related Neuroendocrine Tumors.
www.carcinoid.org
The Carcinoid Foundation maintains a comprehensive website where
much information can be found. From basic information on the disease
to transcripts of recent lectures, you'll find information on the
disease, it's diagnosis, treatment and management. The important
role of nutrition for the carcinoid patient is also addressed here
. The staff at the Carcinoid Foundation can be reached through
their toll-free number 888-722-3132 or 914-683-1001 Tuesday through
Thursday 10:00 AM to 4:00PM, Eastern Time.
www.carcinoidinfo.info
Many Carcinoid patients know the name of Sunny Susan Anderson -
a Carcinoid survivor since 1995- and are familiar with her website.
Of particular interest to us here is the section on Monitoring
Carcinoid.
www.caringforcarcinoid.org
The Caring for Carcinoid Foundation is the leading 501(c)(3) non-profit
funder of carcinoid research. Nancy O'Hagan-herself a Carcinoid
patient-is the Founder and President, and established the Caring
for Carcinoid Foundation to support leading scientists whose research
will hopefully lead to a cure for carcinoid. The Caring for Carcinoid
Foundation is unique in its focus on research-it pursues a clearly
defined, 3-step research road map based on guidance from its Board
of Scientific Advisors. 100% of all donations directly support carcinoid
cancer research and all donations are tax-deductible.
www.naapnet.org
NAAPNET is the North American Alliance of Patients with Neuroendocrine
Tumors and was founded in October of 2004.
www.endotext.org
This website will take you to a wonderful explanation of what gastroenteropancreatic
endocrine tumors are. Those with Carcinoid Tumors, as well as the
rarer Insulinomas, Gastrinomas, VIP-omas, Somatostatinomas, PP-omas
and others will find a wealth of information and a clearer understanding
of these tumors. Highly recommended reading! This is also a wonderful
reference for those with the MEN1 Syndrome.
www.sandostatin.com
The Because the treatment plan for most patients with Carcinoid
will include taking SandostatinLAR it is a good idea to read as
much as you can about the drug. This website will describe why it
is important to begin Sandostatin therapy with daily sub-cutaneous
injections. Follow the links in the site to 'Starting Therapy.'
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