CARCINOID CANCER

A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

Updated:  April 30, 2008

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NEW - “Ode to Noids” - NEW

Wonderful song by David in the UK

See and hear it on YouTube

http://www.youtube.com/mundivagante

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NEW - People Living With Cancer - NEW
this is now the Cancer Net
 link: http://www.cancer.net
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Carcinoid NeuroEndocrine Tumour Society
Canada's Toronto Patient Doctor Conference
Thursday 16 October - Sunday 19 October 2008

Details on "Conferences - Upcoming" section.

www.cnetscanada.org

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 NOTE a list of those local support groups with a web site and/or communication via email is in lower part of the section "Local Support Groups", click on that to your left. 
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Carcinoid Cancer Awareness Network and
Minnesota Carcinoid Cancer Support present  
A Minnesota / Midwest Regional Carcinoid Cancer Conference
Our Minnesota Midwest regional carcinoid conference will be held Saturday, October 4, 2008 from 8:30 a.m. to 4:30 p.m., including lunch. There will also be a "Meet and Greet" dinner on Friday, October 3, 2008 from 6:30 to 10:00 featuring a silent auction and raffle. Both the dinner and the conference will be at the Hilton Hotel in Bloomington, 3800 American Boulevard East (952-854-2100). There is a special room rate of $99 per night for participants who wish to stay over.

Our special guest speakers on Saturday are: Eugene Woltering, M.D.,
Louisiana State University; Thomas O'Dorisio, M.D., University of Iowa; Timothy Sielaff, M.D., Virginia Piper Cancer Center, Minneapolis; Nancy Gardner, PhD ARNP, Rutgers University, New Jersey; and Sidney Levinsohn, R.Ph., author, lecturer, cancer survivor, and guru. Guest speakers and agenda are subject to change.
Check The Carcinoid Cancer Awareness Network (CCAN)
www.carcinoidawareness.org (http://www.carcinoidawareness.org/)
for updates.
* Registration will open March 4, 2008. Please register online at
The Carcinoid Cancer Awareness Network (CCAN)
   www.carcinoidawareness.org  (http://www.carcinoidawareness.org/)
* * You may make your payment using paypal or a credit card.
      You may register by phone if you prefer: 516-781-7814. Please  register early as space is limited to the first 150 people. We will keep a waiting list in case more space becomes available.
* Anyone wishing to donate merchandise for the auction or needing more
   information, please contact Minnesota Carcinoid Cancer Support:
Jan - jaxon7@msn.com (651-454-7707) or Kathy - gkpelk@aol.com (763-421-7295)
Details in "Conferences - Upcoming" section and in "Local Support Groups".
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NEW - FIRST "OFFICIAL" ANNOUNCEMENT OF
THE 2009 NETS PATIENT CONFERENCE
IN NEW ORLEANS - NEW 

     This is the first "official" announcement of the 2009 National NETS Patient Conference in New Orleans.  This conference will start on Thursday evening September 24th 2009 with a short social mixer. This will have heavy munchies and will end in plenty of time for folks to get a great nights sleep or hit the night life here in NOLA.

     For those that were here at the Astor Crowne Plaza last time we did this (2004) you know the hotel is on the corner of Canal and Bourbon Street and it has undergone a multimillion dollar renovation in the last year. We will be having all day conferences on Friday the 25th of September and Saturday the 26th. These talks will be complete by 5 pm CST each day and this will allow you a couple of evenings to rest or to explore the city on your own.

      On Friday I will be planning two separate sessions in the morning in response to the wishes of the group --- session one will be just for "newbie's" and will go over the NET basics in detail. The parallel session will be for the folks who have been to previous conferences and will cover the current state of the art topics and speakers. Both groups will rejoin each other for the remainder of the conference on Friday afternoon and all day Saturday.

    As you know my beady little brain is known to work overtime to pull off a few surprises (my version of pulling an alligator out of my hat --- Remember the pink zebra striped hat ya'all gave me at the last conference?? ---- No self-respecting alligator wants to stay in that NOLA hat!).

      Stay tuned for a couple of real surprises that will make this conference "the conference of the decade" to attend. Special thanks to a = couple of groups who have volunteered to sponsor this effort so far:

OCHSNER MEDICAL CENTER IN KENNER LOUISIANA
 IS GOING TO HOST AND SPONSOR THIS MEETING

THE CARCINOID AWARENESS NETWORK (CCAN) IS GOING TO HELP WITH REGISTRATION AND WILL HELP US PROVIDE THE DAY TO DAY WORKER BEES TO MAN THE REGISTRATION DESKS ETC. ANYONE ONE WHO KNOWS THESE FOLKS KNOW THAT THIS WILL MEAN THAT EVERYTHING WILL RUN SMOOTHLY. 

     We are in the process of contacting corporate sponsors to help make this conference happen. Again -- (like the last time) breakfast and lunch on Friday and Saturday and the munchies at the Thursday evening mixer will be part of the registration cost (TBA). You will be on your own for dinner on Thursday (if you are still hungry - after the social event --- but if you were here last time I think that you won't be hungry) and will be on your own on Friday and Saturday for dinner.

      We will have to guarantee the A-C-Plaza 200 room nights on Thursday and Friday and Saturday and we will limit registration to the first 500 folks who sign up. As you know the Portland and Norfolk conferences had waiting lists so don't be a  "I SHOULD OF "--- PERSON.

     Stay tuned for specific meeting registration information and how to sign up for room registration at the Astor Crowne Plaza.

     Let's all take a moment to thank the folks who are helping us do this --- the Kenner Ochsner team and the CCAN team!!!  More "thank ya'alls" will be coming as I enlist more sponsors. 

     Put this on your schedule RIGHT now---you will forget this if you = don't do it now!!!! 

Please pass this along to all of your support groups, on line groups (yahoo – ACOR - etc) and tell your docs and their staffs. 

     While this is not a CME conference ---- it is perfect for the doc or office staff who wants to learn about NETS so that they can take better care OF YOU!!!!!

PLUS IT IS IN NEW ORLEANS -- the most fun city in the world ----- smile -- unlike Las Vegas -- what happens in New Orleans remains buried in the swamp ---- FOREVER! 

Eugene A. Woltering MD FACS
The James D. Rives Professor of Surgery and Neurosciences
LSUHSC Department of Surgery
New Orleans LA 70112
504-884-3555-cell
Clinic address: 200 West Esplanade Ave, Suite 200, Kenner La 70065
504-464-8500 - clinic appointments
504-464-8525 -clinic fax
1-866-91-ZEBRA (1-866-919-3272)

Details on "Conferences - Upcoming" section.

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NEW - I "Sunny Susan" was invited to write a Blog - NEW
on the web site of the Arizona Republic
newspaper as they have liked letters I have
written to the editors over the years. 
March 26, 2008 was my first Blog.
I have written additional articles, but not
on a set schedule.  Among the Blogs I have written are:

You may go to my Blog by clicking on the line below or one
of the blue lines above: http://www.AZcentral.com/members/Blog/sunnysusan

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 Susan's Family Tree (Ahnentafel  Chart)

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 The recorded version of the
Web seminar
 Diagnosis & Treatment of Carcinoid Cancer & NETs
on December 15, 2007

Go to the CCAN web site: http://www.carcinoidawareness.org)

If you have comments or questions, contact the seminar host,
Robert Wahmann, at: carcinoidaware@aol.com

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Once-Monthly Somatostatin Analogue Increases Overall
Survival in Carcinoid Syndrome
 published May 16, 2005 in Medical News Today
by Dr. Lowell Anthony. Click here    

 A 5-Decade Analysis of 13,715 Carcinoid Tumors published 2003
in The American Cancer Society by Dr. Irv Modlin, et. al.
it is available at www.pubmed.gov  (http://www.pubmed.gov)
 search the title.  Notice in the full article --
the survival increased when Sandostatin was introduced.

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See a new listing of the local Carcinoid support groups that have
with a web site and/or elist for communications. 
List in: On-Line Support and Local Support Groups.
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 Dr. Woltering's lecture on the Carcinoid Cancer Foundation's
web site http://www.carcinoid.org,
along with other videos and transcripts from past lectures.
Direct link to this page is:
http://www.carcinoid.org/pcf/lectures/index.shtml

Or

The most recent lecture Dr. W has given was of the  Video recordings
 from The Carcinoid Cancer Awareness (CCAN)
3rd annual patient conference November 11, 2007,
is now available online.
 Access and view them from their website.
 http://www.carcinoidawareness.org/

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Ochsner Neuroendocrine Tumor Team

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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/

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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

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 Text of presentation given Sept. 30, 2006
by
Howard Anderson
 “Living With Uncertainty: Specifically For Caregivers”
Click here

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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 10 years old on April 27, 2007, 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

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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

Copyright © 1997-2008 Susan L. Anderson. All Rights Reserved.

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Copyright © 1997-2008 Susan L. Anderson. All Rights Reserved.
Last modified: 04/14/08