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CARCINOID CANCER

A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

 

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Upcoming Conference

Updated:  April 16, 2008

 

              Carcinoid Cancer Awareness Network and
            Minnesota Carcinoid Cancer Support present  

 
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.

* The price for the conference $20; the dinner $45.
* Proceeds from the silent auction will be used to further carcinoid awareness and research.
* These events are open to all interested patients, caregivers, family, friends, and medical personnel from anywhere in the U.S.
   and Canada (or any other place you may live).
* Registration will open March 4, 2008.
Please register online at
   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 also in "Local Support Groups" section.

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Carcinoid NeuroEndocrine Tumour Society
Canada's Toronto Patient Doctor Conference
Thursday 16 October- Sunday 19 October 2008


I am pleased to report that the Toronto Patient Doctor NET Conference
is developing well and one major goal as we become organized is to
create a conference agenda which comes together well for patients and
doctors so all registrants can get maximum benefit from the
experience. We also want to make this a warm, caring, and fun social
experience.


We have a cross Canada Task Force for the conference who keep in
touch in a variety of ways, and we are truly having fun as we try to
figure out what might work for everyone in Toronto, which is also a
real tourist destination. But more of this in another bulletin.

We have a Hotel, the Crowne Plaza Don Valley, about 10 minutes out of
the city centre by car, just up the Don Valley Parkway from the CN
tower and downtown. We'll let you know when booking and registration
is open.


We have a reasonable rate of $112.00 per night, Canadian, per room,
with this rate available for three days before and three days after
the conference. This works out at about $114.00 USD per night. This
is just for info right now.

We have not set up registration or online booking yet, but we have
been working on a system through the Hotel, which allows online
registrations and online Hotel bookings to be cross referenced with
one another, so that if you book and don't register or vice versa, we
will know to check with you about this. We can have non-online
bookings as well. Of course a number of registrants will not be
staying at the Hotel so we can't assume that if you register you will
be staying but it's still handy to be able to double check.


We have a number of NET speakers from Europe as well as speakers from
Canada and the US coming.  These include
Drs Richard RP Warner, Eugene Woltering, Thomas O'Dorisio, Sue O'Dorisio, (US) Dr Kjell Oberg,(Sweden) Dr Richard Baum, (Germany) Dr Philippe Ruszniewski,(France), and Drs Ralph Wong, Lillian Siu, Richard Malthaner, Daryl Grey, Doug Quan, Calvin Law, Peter Metrakos, Robert Reid, and Walter Kocha, from Canada, Philippa Davies, Nurse Practitioner at the UK's Royal Free, will also be
speaking. We are waiting to see if one of the doctors from the UK
Royal Free can come. We also have a couple of doctors who need to
check to see if they can make it, before we announce their
participation.

We hope to have another bulletin for you shortly, which will be more
detailed, about such things as registration and the conference
speakers. Meanwhile, please mark your calendars. We are looking forward to seeing you in Toronto.


Warm regards,
Maureen Coleman
President, CNETS Canada.
Chair, Conference Task Force.
   www.cnetscanada.org

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NEW - Carcinoid Conference in Harrisburg, PA! - NEW

Diagnosis and Treatment of Carcinoid Cancer:  What We Need to Know.

Saturday, April 26, 2008, 9am - 4pm in Harrisburg, PA. 

Featured speakers:  
Dr. Matthew Kulke, Dr. Thomas O'Dorisio
and Judy Lyter, RN, MS, LPC  
Dr. Harold Harvey, moderator

Details, including the agenda, can be viewed at the PCCAN.net website (see Conference) or using the following link http://www.pccan.net/index_files/Page700.htm
Check  The Carcinoid Cancer Awareness Network (CCAN) www.carcinoidawareness.org (http://www.carcinoidawareness.org/)
for updates.

Please register early-- on-line registration is available.

Teresa Lanza
Pennsylvania Carcinoid Cancer Advocacy Network 
CarcinoidSupport@juno.com
717-576-5095
PCCAN.net

 +++++++++
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)

 +++++++++

Photo's and info on all the speakers at the Carcinoid Conference
Sept. 28 to 30, 2006, in Portland, OR.  
http://www.urzebra.net/speakers.php

++++++++++
New book for the medical community:

Neuroendocrine Tumors: A Comprehensive Guide To Diagnosis and Management published by Inter Science Institute.

Authors:

Eugene A. Woltering, MD, FACS; Aaron I. Vinik, MD, PhD, FCP, MACP; Vay Liang W. (Bill) Go, MD; Thomas M. O’Dorisio, MD.

Those attending the Carcinoid Conference in Portland, OR
Sept. 28 - 30, 2006

received a copy of this book on CD in their registration packets.

I++++++++++

A note from "Sunny" Susan Anderson regarding conferences.

From my experiences I can say, when attending a conference, you shall have a very educational and enjoyable time.  First we get to meet and hear some very special doctors speak, so we learn new things; then we are able to put faces with the people we only know on-line by their names;  we net-work with old friends, make new friends and know that we are not alone in battling our neuroendocrine cancer.


For the seven conferences I have attended, and others I was not able
to attend, click on the links to
 Conferences Past and Conference Pictures.  The conferences that I have been fortunate to attend were: 
 
March 3 and 4, 1999, The history making 1st Carcinoid
Seminar, Sarasota, Florida
 
May 11 and 12, 2000, The 2nd National Carcinoid Symposium
2000, Sarasota, Florida
 
April 12 & 13, 2002, The 3rd National Carcinoid Symposium,
Tampa, Florida
 
October 25, 2003 - CA Carcinoid Fighters Seminar 2003,
Santa Ana, California
 
September 23, 24, 25, 2004, Carcinoid Conference, New
Orleans, LA and
 
November 20, 2004,  1st International Meeting of Patient
Self-Help Groups (ENETS) Berlin, Germany

September 22, 23, 24, 2005, Carcinoid Conference, Philadelphia, PA

September 28, 29, 30, 2006, National Carcinoid / NET Conference, Portland, OR

* * * * * * * * * *

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.  This web site was 10 years old on April 27, 2007, and my plan is to keep it updated for many 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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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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Copyright © 1997-2008 Susan L. Anderson. All Rights Reserved.
 


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