What is a healthy diet for
neuroendocrine tumor patients? If a NET patient has carcinoid syndrome which
foods should be avoided? Are supplements recommended for carcinoid/NET
patients? When NET patients have problems related to malabsorption and
various therapies, what changes should be made in their diet? These are
among the many questions answered by Jeffrey I. Mechanick, MD and Leigh Anne
Kamerman Burns, RD, CDN in the Carcinoid Cancer Foundation's video,
Nutrition and Neuroendocrine Tumors.
A must
see/read by Bill Claxton of Singapore
http://cnets.org/attachments/netcancer_monograph_wmc_rev5.pdf
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Carcinoid Cancer Foundation Releases New Video Series
Beginning with “The ABC’s of Carcinoid/NETs”
What is the most common kind of neuroendocrine tumor (NET)? How do these
tumors grow? What is carcinoid syndrome? What are the quality of life issues
for patients? In “The ABC’s of Carcinoid/NETs,” three of the
world’s leading carcinoid and NET cancer specialists –
Dr. Richard R.P. Warner,
Dr. Edward M. Wolin, and
Dr. Eugene A. Woltering – talk about the advice they offer
their patients, the advances they have seen during their careers, and what they
anticipate will be available for NET patients in the future.
http://www.youtube.com/watch?v=9U6q78a1xaQ
If you or a loved one were newly diagnosed with carcinoid cancer or another
neuroendocrine tumor, such as a pancreatic neuroendocrine tumor (pNET), what
would you want to know about these rare diseases? What information would you
like to share with your local doctor? Learn more in the first video of a new
series presented by the
Carcinoid Cancer Foundation.
In recognition of the 3rd Annual Worldwide NET Cancer Awareness Day
on November 10, 2012, the Carcinoid Cancer Foundation released the second video,
"Faces of Hope," in its 2012 series. Meet NET cancer survivors Claire, Josh, Judy, Kathy,
Kenneth, and "Sunny" Susan as they share their journeys about being
diagnosed and living with rare neuroendocrine tumors, including lung carcinoid,
carcinoid of the ileum, and pancreatic neuroendocrine tumors. Future videos in
the series will focus on surgery and treatment options, lung carcinoid, and
nutrition. (Click on the YouTube logo below to see the video in a larger
format.)
"If you don't suspect it, you can't detect it."
http://www.youtube.com/watch?v=5IqspD6YDEo
3rd Video is about LUNG
Carcinoid/NETs.
http://youtu.be/_nOtls5R_Yc
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Additional video that are not part of this series but are
available on YouTube.
http://www.youtube.com/user/CarcinoidNETs. Two are listed below but there
are others, be sure
they are from the Carcinoid Cancer Foundation (CCF) for good medical
information
Surgery and Treatment Options for
NET Cancers
What are the surgical and treatment options for carcinoid and neuroendocrine
tumor patients? For patients with tumors that have spread to the liver which
therapies should be used to improve quality and quantity of life? How do
patients benefit from clinical trials? There is an explosion of technologies
coming not only in the diagnostics but also in the treatments of these rare
cancers. View the latest video from the Carcinoid Cancer Foundation:
http://bit.ly/VcJXgz http://www.youtube.com/watch?v=ZQhysl6g_6E
"Surgery for
Neuroendocrine Tumors: What Every Patient Should Know"
-- Carcinoid/NET specialist Dr. Rodney Pommier, Professor of Surgery,
Division of Surgical Oncology, Oregon Health & Science University, is featured
in this video, made possible through a collaborative effort of the New Jersey
Carcinoid Cancer Network and the Carcinoid Cancer Foundation.
http://www.youtube.com/watch?v=wsahfdsJwFA
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This
web site will be 18 years old on April 27, 2015, and
my plan is to keep it updated
for many years to come.
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Neuroendocrine Tumor Program
Ochsner, Kenner, LA "The DREAM TEAM"
click here:
http://www.ochsner.org/programs/neuroendocrine_tumor_program/
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Have you visited this web
site in the United Kingdom?
NET Patient Foundation incorporating Living With Carcinoid
www.netpatientfoundation.com.
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The Carcinoid Heart Center (click to
the left)
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NET Guidelines
from NANETS (North American NeuroEndocrine Tumor Society)
http://nanets.net/research/articles/nanets-guidelines
This information also in the sections of
this web site under:
1) Monitoring Carcinoid, 2) Coping and 3) Resource Library
**********
Carcinoid & NET (neuroendocrine tumors) Cancer Fact Sheet
1. These orphan diseases (defined as occurring in less than 200,000
people) are currently diagnosed in approximately 5.4 of every 100,000 people in
the United States population.
2. Over 90% of all carcinoid/NETs are initially incorrectly diagnosed and
treated for the wrong disease.
3. The average duration from the onset of symptoms to proper diagnosis
exceeds five years.
4. There are approximately 110,000 people living with carcinoid/NETs in
the United States.
5. There are less than 100 carcinoid/NETs specialists in the U.S.
6. Many physicians are misinformed about carcinoid and neuroendocrine
tumors, and believe that these cancers are benign, slow growing and don’t
metastasize (spread).
7. Irritable Bowel Syndrome (IBS) and Crohn’s disease are the two most
common misdiagnosed conditions for patients with midgut carcinoid.
8. Abdominal pain, flushing, diarrhea, wheezing, bloating, heart
palpitation, weakness, skin rashes, heartburn and weight changes are the most
prevalent symptoms of carcinoid & neuroendocrine tumors.
9. The average age of the current carcinoid/NETs specialist in the U.S.
exceeds 60 years old and there are few younger physicians entering this
specialty.
Facts about the Carcinoid Cancer Foundation (CCF)
1. The Carcinoid Cancer Foundation was founded over 40 years ago in 1968.
2. CCF was originally founded to support Dr. Richard R.P. Warner’s
research at the Serotonin Laboratory at Mt. Sinai in New York City after the
completion of a research grant from the National Institutes of Health (NIH).
3. Dr. Warner, the Carcinoid Cancer Foundation’s Medical Director, is
recognized as one of the leading carcinoid/NETs specialists in the world.
4. The mission of the Carcinoid Cancer Foundation is awareness, education,
advocacy, and the support of research for carcinoid and NET cancers, all with
the ultimate goal of finding a cure for these rare diseases. The mission can be
summed up with this positive image: REACH – Research, Education, and Awareness
with Compassion and Hope.
5. The Carcinoid Cancer Foundation’s website is, perhaps, the most visited
carcinoid/NETs related website in the world, with over 1 million visitors during
the past 10 years.
6. CCF serves thousands of patients, caregivers, family members, friends,
and members of the public and the medical community annually with a toll-free
education and support telephone line and by answering e-mails addressed to the
Foundation.
7. CCF has been instrumental in the formation of nearly all (over 40)
support groups for carcinoid/NETs patients throughout the United States.
8. CCF played a major role in the creation of NANETS (North American
Neuroendocrine Tumor Society), which is the medical practitioner counterpart to
the Carcinoid Cancer Foundation.
9. The Carcinoid Cancer Foundation is represented on the
Steering Committee for Worldwide NET Cancer Awareness Day, an annual global
campaign to bring about greater awareness of NET cancers.
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THE WARNER
ADVOCACY AWARD
The award was established in 2009 by Novartis Oncology
to commemorate the life and work of Monica
Warner, who passed away in August of that year. Mrs. Warner
was a strong advocate for patients through the Carcinoid Cancer
Foundation, a neuroendocrine tumor (NET) patient advocacy group that
continues to help countless people.
* * * * * * * * * * * *
Visit the Blog of the Carcinoid
Cancer Foundation, Inc.
URL:
http://carcinoid.wordpress.com
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On the Travel section of this web site, click button to your left:
Photos from some of our trips.
On photo pages click on any "thumbnail"
image for a larger view.
* * * * * * * * * * * *
When she was finally diagnosed with carcinoid
cancer in 1995, Susan Anderson
had already spent 8 years trying to find out what was the cause of
her “anemia,”
pain, and losing 62 pounds in 6 months. Little ...
To read the full blog please click here:
carcinoid.wordpress.com
Then scroll down to May 1, 2010
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PLEASE see the message from Dr.
Eugene Woltering in the "Awareness" section of this web site.
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Assisted Living Directory
Also listed in Resource Library section of this web site
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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 http://www.medicalnewstoday.com/articles/24501.php
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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
http://www.ncbi.nlm.nih.gov/pubmed/15599742
search the title. Notice in the full article --
the survival increased when Sandostatin was introduced.
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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.
* * * * * * * * * * *
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.
* * * * * * * * * * *
Text of presentation given Sept. 30, 2006
by
Howard Anderson
“Living With Uncertainty: Specifically For
Caregivers”
Click here
then scroll down
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*Please read last section on this page - below.
Thank you, Susan
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 will be 18 years old on April 27, 2015, 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 © 1997-2015 Susan L. Anderson. All Rights
Reserved.
