On Line Support

Scroll down for: Local support groups with a web site and/or communication via email - NEW

The ACOR CARCINOID Cancer On Line Support Group began 2 April 1997 -- now has more than 500 participants. This is a forum for questions, answers, factual information, tips on living with this type of cancer, treatments, shared experiences, a bit of humor, poetry, plus good things to think about, and a place to receive and give emotional support. The messages are archived for all to use. To join the ACOR Carcinoid Cancer On Line Support Group: CLICK HERE

CARCINOID SUPPORT
A new, unique, support group on Yahoo called carcinoid_support has just been started. The purpose of this group is:
We are cancer survivors (mostly carcinoid) who today have no prospect of going into remission but whose treatment regimens are geared towards making their cancer a chronic condition. Here we discuss more about learning to live with carcinoid, day by day--not the medical aspect but the emotional adjustment. signup at -- http://health.groups.yahoo.com/group/carcinoid_support/

LUNG NOIDS
This is a carcinoid online group dedicated to lungnoids and other foreguts. This group was started because the standard of treatment for lung/stomach/pancreatic noids is different than the intestinal noids.
To join go to http://groups.yahoo.com/group/lungnoids

MEN1 Support Group
MEN1 is a hereditary syndrome that causes tumors—mostly endocrine—in different organs. Sometimes, but not often, carcinoid tumors develop.
This list was created for patients, family members, and caregivers to offer caring, support, guidance, and up-to-date information on living and coping with Multiple Endocrine Neoplasia Type 1 (MEN1). All are welcome to join. CLICK HERE

NET Islet Cell Tumor Support Group
Islet cell tumors are some of the rarest of the neuroendocrine tumors, and include VIPomas, gastrinomas, insulinomas, glucagonomas, and pancreatic islet cell carcinomas. Some islet cells are non-functional. They do not produce a hormone that, as of yet, the medical profession can identify or a syndrome that they recognize. This is an information and education group for patients, family members and medical professionals dealing with islet cell tumors. This list is monitored by medical professionals, and is a good place to ask general questions about your disease and for people to share their clinical experiences. This isn't a support list. If you need support, please contact the list owner privately and she will offer you support resources. To join this group email them at: carcinoid-subscribe@yahoogroups.com , or CLICK HERE

NOID Friends: "We are here to share about all kinds of topics -- carcinoid (of course), medical articles, health insurance, medicines, treatment options, member experiences, symptom management, medical providers, case management, dealing with doctors and other medical providers, Social Security Disability (Carcinoid qualifies), emotional issues, family concerns, caregiver info and support, understanding procedures, learning to be a better patient, dealing with a chronic illness, specialty labs, and so much more. If you can think of it, we can discuss it. We are all in this together."
To join send an email to: noids-subscribe@topica.com

Zollinger Ellison Syndrome (ZES). This is a support group for patients, caregivers, and family members. It is the hope of list owners to offer current information, support, and knowledge so we can all be "in the know", for only in knowledge can we truly be a partner with our health care team. Join us and welcome. CLICK HERE

NEW - Local support groups with a web site and/or communication via email - NEW

NORTHERN CALIFORNIA NEUROENDOCRINE CANCER FIGHTERS (NCNCF)
NCNCF-subscribe@yahoogroups.com & http://health.groups.yahoo.com/group/NCNCF/

NORTHERN CALIFORNIA CARCINOID NEUROENDOCRINE SUPPORT GROUP
NorCal CarciNet – (NCCN) An affiliate of Calif. Carcinoid Fighters - (CALCF)
Web: www.carcinoid-net.org

SUPPORT~EDUCATION~AWARENESS (SEA) for those Living with Carcinoid
visit their website: http://www.SEA4carcinoid.com

CONNECTICUT CARCINOID INITIATIVE (CCI)
website: http://www.ctcarcinoid.homestead.com

New England Carcinoid Connection, Inc. (NECC)
Visit the website: http://www.carcinoid-newengland.org/

Capital Area Carcinoid Survivors (CACS)
http://hometown.aol.com/cacsva/cacswhen.htm

Florida Carcinoid Support Group
Web site: http://www.floridazebras.org/Home_Page.html

Metro Atlanta Carcinoid Awareness Group (MACAG)
http://groups.yahoo.com/group/MACAG

Chicagoland Carcinoid Fighters
web site at: http://www.freewebs.com/chicagocarcinoid/

Capital Area Carcinoid Survivors (CACS)
http://hometown.aol.com/cacsva/cacswhen.htm

BOSTON CARCINOID SUPPORT GROUP
http://research.dfci.harvard.edu/neuroendocrine/

Michigan Carcinoid Support Group
http://www.carcinoid.org/support/webpages/MCG.htm

Metro NY Carcinoid Support Group (MNYCSG)
Web site: http://www.carcinoid.us/

Carcinoid Cancer Awareness Network, Inc. (CCAN)
http://www.carcinoidawareness.org

MidAtlantic Carcinoid-NeuroEndocrine Tumor Association (MACNETA)
MACNETA-subscribe@yahoogroups.com

Pennsylvania Carcinoid Cancer Advocacy Network (PCCAN),
PCCAN-subscribe@yahoogroups.com

Delaware Valley Carcinoid Connection
http://www.phillycarcinoid.org/Home_Page.html

CARCINOID CANCER TEXAS SUPPORT (CCTS)
http://www.carcinoid-TX.org

There is an on-line group for Canadians and some interested Americans.
carcinoidnetscanada@yahoogroups.ca

CarciNor (the Carcinoid patients association in Norway)
http://www.kreftforeningen.no/dt_firstlist.asp?gid=2692

Carcinoid Patients Organization in Poland

http://www.rakowiak.pl/

CARCINOID PATIENTS ASSOCIATION (CARPA) in Sweden.
http://www.carcinoid.org/support/docs/CarcinorBrochyr.pdf

NET Patient Foundation incorporating Living With Carcinoid (in the UK)
www.netpatientfoundation.com & www.netpatientfoundation.com/?page_id=49

Carcinoid-Neuroendocrine Tumour Society-Canada (CNETS)
Coming soon www.cnetscanada.org

NEW - North American Neuroendocrine Tumor Society (NANETS)
is composed of physicians whose main mission is to increase
awareness and knowledge of neuroendocrine tumors and to
promote education through the dissemination and sharing of
information in the medical community . These physicians also
help to increase awareness within the general public of these
often rare conditions by working closely with global support
groups. Click here: http://nanets.net/joomla/

The European Neuroendocrine Tumor Society (ENETS)
is composed of physicians whose main mission is to increase
awareness and knowledge of neuroendocrine tumors and to
promote education through the dissemination and sharing of
information in the medical community . These physicians also
help to increase awareness within the general public of these
often rare conditions by working closely with global support
groups. Click here:
http://www.neuroendocrine.net/rel/index.php4?rubrik_id=1&headline=Home

We are pleased to announce that the Association of Cancer

Online Resources (ACOR) has agreed to host a Listserv called

Carcinoid-Dr. Members of the Listserv communicate with each

other by sending e-mails to the Listserv, which then distributes the messages to all other members. This Listserv was activated in February 2006.

Membership in this Listserv is limited to healthcare professionals. Carcinoid patients and their caregivers are welcome to tell the members of their medical team about this resource. Any healthcare professional who wishes to subscribe

should send an e-mail to carcinoid-dr-request@listserv.acor.org

and describe their professional credentials and their reasons for joining, and provide their office address and phone number.

Feel free to share this information with other Carcinoid

and neuroendocrine patients and their caregivers, as well

as any healthcare professionals who you believe may be

interested in participating in Carcinoid-Dr.

Please read last section on this page - below. Thank you, Susan, 1-26-2009

Since 1996 --- when I first located others with Carcinoid --- I have answered every email sent to me, although some replies were delayed longer than I liked. I am NO longer able to reply to all e-mails due to the volume and other things going on in my life (all good). I do love hearing from others, but an unable to reply to all individually. I shall not forget my many Carcinoid friends and of course shall reply to you … as time permits. This web site was 11 years old on April 27, 2008, and my plan is to keep it updated for many years to come.

Since my husband "retired" I am away from my computer for days, and sometimes, weeks at a time. Yes, there is wireless internet and we have tried that a number of places. But, if I deal with email when we are away from home then it is not a "restful vacation" for me.

PLEASE use the SEARCH capability at the top my pages. You may search for a word, a phrase, a drug, a treatment, a book title or anything you can think of. You may search this site only, or search the complete World Wide Web.

To speak with a person please know you may call the “telephone information and support line” of the Carcinoid Cancer Foundation, Inc. (CCF), Tuesday through Thursday 10 a.m. to 4 p.m. Eastern Time at 1-888-722-3132 (free) or 1-914-693-1001. “The information and support line” is staffed by medical professionals. Mondays and Fridays are research days, if you call then and do not reach a person do leave a clear message. The Carcinoid Cancer Foundation’s (CCF) superb web site is at http://www.carcinoid.org

CCF - Serving the carcinoid/NETs patient and medical community for close to forty years (chartered in 1968)
“Meets Extensive Standards of America’s Most Experienced Charity Evaluator”
Better Business Bureau

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DISCLAIMER: I am a patient and NOT a medical doctor or health care professional. I share information and links to information that has been helpful to me and that I believe to be correct and good, but I cannot guarantee the accuracy of this information, except for MY stories. I urge you not to rely only on this information but I believe you should discuss your situation and information with your medical doctors and/or other medical professionals. "Sunny" Susan Anderson

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CARCINOID CANCER

A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

ON-LINE SUPPORT GROUPS

Send mail to SunnySusan@cox.net with questions or comments about this web site.
Copyright © 1997-2009 Susan L. Anderson. All Rights Reserved.
Last modified: 08/11/09

CARCINOID CANCER

A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

ON-LINE SUPPORT GROUPS

Send mail to SunnySusan@cox.net with questions or comments about this web site. Copyright © 1997-2009 Susan L. Anderson. All Rights Reserved. Last modified: 08/11/09

Send mail to SunnySusan@cox.net with questions or comments about this web site.
Copyright © 1997-2009 Susan L. Anderson. All Rights Reserved.
Last modified: 08/11/09