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CARCINOID /
NEUROENDOCRINE TUMOR AWARENESS
Updated: 27 April 2017
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27 April 2017 this web site was 20 years old, the 1st by a Carcinoid
patient!
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There is
HOPE for those diagnosed with
Carcinoid/NETS.
I've started
my 23rd year of active, full life: May 10, 1995 -- May
10, 2017.
April 27, 2017 was the 20th anniversary of this page;
the FIRST by a Carcinoid patient.
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April 23, 2014
I began Dialysis
every evening at home
due to being Stage
5
Chronic Kidney Disease.
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My memoir book
Becoming Sunny
Susan
is now available
in
softcover and
ebook! By Susan L.
Anderson
NEW -
Click on
http://www.youtube.com/watch?v=sBZnPOGHf-8
to view the
90 second book trailer video from
YouTube!
My story is one many
of you can identify with – an uplifting look at a life that I am determined to
live well, despite all the obstacles I have been dealt. At the heart of the
story is the idea of LIVING with cancer. It took eight years to correctly
diagnose my rare disease, Carcinoid/ Neuroendocrine Tumors. Then, they said I
would die in just a few more years. That was 18 years ago, and here I am!
How have I faired? Very well. Read the book to find out how I have lived a happy
life, even with cancer.
Would you help to spread
the positive word by telling your friends, by gifting the book, and by
posting a review for other readers on the
www.amazon.com page? We know how
valuable a positive recommendation can be.
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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, 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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Many of these are NEW links although
same topic! * * * * * * * * * * * *
Worldwide NET Cancer Awareness Day November 10, 2013
Neuroendocrine Tumors (NETs) is the umbrella term for a
group of unusual, often slow-growing cancers, which develop
from cells in the diffuse endocrine system. They are found
most commonly in the lung or gastrointestinal system, but
they can also originate in other parts of the body such as
the pancreas, ovary, and testes, among other sites.
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Mildred “Millie” Kowalski, of Novartis Oncology announced at the
Carcinoid Conference, in New Orleans, 9/22/2012 that I, Susan Anderson,
am the recipient of the 2012 Warner Advocacy Award. I was sorry that we
were unable to attend. I am honored and thrilled to receive this very
meaningful award! Dr. Richard R. W. Warner, at my request, accepted
this award on my behalf.
Recognizing the need for greater patient support,
Susan created the first website about NETs by a
patient, which celebrates its 15th anniversary this
year. The site,
carcinoidinfo.info, continues its success in
assisting people affected by the disease, and has
more than 380,000 visitors. In addition to this
"labor of love," Susan has dedicated her time to
personally answering more than 100,000 e-mails,
assisting patients and caregivers from around the
world. Susan's in-depth relationships within the
carcinoid/NET community even allow her to refer
international patients to support groups in their
respective countries.
Susan has attended
numerous conferences throughout the world as a guest
speaker, including the first International Meeting
of Patient Self-Help Groups in Berlin, Germany. One
of her fondest memories is from 2009, when Dr.
Richard Warner invited Susan to take part in a
12-person panel of patients with carcinoid cancer at
the Patient Support Advisory Board meeting in New
York. When not attending conferences, Susan
participates in many boards and support groups, some
of which she has founded.
"Sunny" Susan has her nickname for a reason. Each
step of her journey has been accompanied by
unwavering optimism, determined energy, and an
incredible zest for life. It makes sense that her
daily goals are to "have some good 'belly laughs,'
assist others, and live each day to its fullest
enjoying each and every one."
Susan is honored to share recognition alongside
the late Monica Warner, the pioneer of Patient
Advocacy for NET patients who was also a dear
friend. The recognition also extends to amazing
patient advocates everywhere, including Maryann
Wahmann and Jan Naritomi-Hart, the 2010 and 2011
Warner Advocacy Award recipients, respectively.
Please visit the
Warner Advocacy Award Guest Book and leave a
message congratulating our 2012 winner.
To learn more about the Warner Advocacy Award,
click
here.
Novartis Patient Advocacy
Novartis Oncology Affairs and Patient Advocacy provide
support to patients through an array of programs and
services
read more
The NET Alliance
The NET Alliance is a Novartis Oncology initiative to
help improve outcomes for patients with NETs
read more
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Sunny Susan Anderson
is one of three featured in the Carcinoid Cancer Foundation, Inc.'s
annual fund raising appeal (November 2010), part of which is below.

WE ARE THE FACES OF CARCINOID
Dear CCF Supporter and Friend,
We are your mother, your father, your sister, your brother, your
neighbor. We are you. As many of us already know, carcinoid cancer is
life-changing. Its symptoms are often difficult to distinguish from those of
many more common illnesses, at least until the cancer more fully develops.
Then the disease has a profoundly terrible impact on us and our families
These tumors can be successfully treated if they are diagnosed and
treated properly. With the proper care, we can return to a normal lifestyle
However, a diagnosis requires a trained specialist. On average, five years
pass between the first symptoms and correct diagnosis and the start of
appropriate medical care. These are five critical years. During this time,
the disease progresses, the symptoms intensify, pain worsens, and our
prognosis becomes less positive. This does not have to be the case. We are
living testaments to the benefits of an accurate diagnosis, medical
treatment, and the support of others who have been challenged by these
tumors.
Fortunately there is one organization that is doing so much to change the
statistics and to provide patients with access to valuable information and
education -- The Carcinoid Cancer Foundation (CCF). It is, in part, because
of CCF that we are now living more fulfilled lives, with hope and an eye
toward the future. That’s why we are now turning to you to request your help
in extending the support of CCF to thousands of others across the nation.
CCF is the recognized leader in educating patients, providing them with
the needed information that makes it possible for people like us to
recognize our symptoms, learn what to ask our doctors, and be proactive in
securing treatment. Today, as survivors who have thrived, we owe much to CCF
for its support and we now feel it’s our time to repay CCF by supporting
this fund raising initiative.
There is much more to be done and CCF needs your help.
Enclosed is a fact sheet which highlights some of the work and
accomplishments of CCF. As you read this, we are asking that you remember
the human and personal element. CCF’s work and commitment has made a great
difference in our lives. The Foundation will continue to benefit thousands
of others just like us.
We need you to make a gift to CCF that is financially and personally
meaningful. Through your generous support, you will be providing the gift of
life to those with carcinoid and neuroendocrine tumors. This is truly a gift
that will continue to give hope to us, to your neighbors, your friends, and
your family. Thank you for your most thoughtful consideration. We send you
our best wishes for a joyous Holiday Season and a bright New Year.
Sincerely,
"Sunny Susan" Anderson
Tax-deductible contributions to the Carcinoid Cancer Foundation can be
made by check (mail to The Carcinoid Cancer Foundation, 333 Mamaroneck
Avenue #492, White Plains, NY 10605), online at
http://www.carcinoid.org,
or by phone (using Visa, MasterCard or American
Express) at 888-722-3132.
My bio with the fund raising letter:
"Sunny Susan" Anderson – age 72
Many people who have contacted me, after finding my website,
www.carcinoidinfo.info,
have told me their story is similar to mine. We started searching for the
cause of my "gastrointestinal pain," "ulcers," "gallbladder" and other
problems when I was 49 years old in 1987. I was very active within the
Arizona community. One of the local doctors told me I was paranoid following
my gallbladder surgery and it was all in my head. I lost 62 pounds during
the last six months of my search for answers.
After an eight-year search, when I had surgery in May 1995, I was
diagnosed with carcinoid cancer in my ileum and lymph nodes which had spread
to my liver. I immediately did research on the Internet. All I found then
was the old and outdated "wait and see" approach and you’ll be dead within
three to five years. I refused to accept this! After surgery I felt better,
regained the weight I had lost, but still had pain .
I was told to "learn to live with it."
Finding the Carcinoid Cancer Foundation (CCF) in 1996 was a ray of
sunshine, good medical information and hope for the future. I learned I did
not have to live with constant pain. My search for answers began in 1987 and
did not really end until 1997 when I consulted with the Medical Director of
CCF, one of the world’s leading experts on carcinoid, Richard R.P. Warner,
MD, who turned my life around and gave me back my good quality of life. Dr.
Warner’s treatment, along with my second surgery in October 1999, has me
stable.
Today I do routine blood tests, CT’s, MRI’s, and scans as deemed
necessary to monitor my excellent quality of life. Daily I count my
blessings, give thanks for those blessings and the Carcinoid Cancer
Foundation. As my wonderful husband, Howard, says, "Each day is a gift."
CCF
and Dr. Warner were my lifesavers and are my heroes!
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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2nd
Worldwide NET Cancer Awareness Day November 10, 2011
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Video
Recordings and Lecture Transcripts of Local and National
Patient Carcinoid/NET Conferences
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It is with great sadness that
I share the following information with you.
Monica and I became friends, via the telephone and email, in 1996,
and met for the first time in NYC in 1998.
We just clicked and I always felt like she was the sister that I never had.
I echo the words of Maryann Wahmann below.
In lieu of flowers,
it was Mrs. Warner’s wish to enable the continuation of the many activities
of The Carcinoid Cancer Foundation and donations can be made in her memory
(please see below). Susan Anderson
It is with a very heavy heart that I have to pass the news to you! Monica
Warner was an amazing women and our number one advocate for everyone
in the NET community around the world . She will be missed by all. Please
keep Monica,
Dr Warner and their family in you thoughts and prayers. Maryann
IN MEMORIAM
MONICA E. WARNER
May 16, 1937 – August 7, 2009
It
is with profound sorrow that The Carcinoid Cancer Foundation Board of
Directors and staff announce the death of Monica Warner, a driving force
behind the foundation for over 20 years. Mrs. Warner died unexpectedly on
Friday, August 7, 2009. We extend our deepest sympathy to Richard R.P.
Warner, M.D., and his family on the passing of his beloved wife, Monica.
Since 1987 Mrs. Warner served as CCF’s Director of Development
and Research Coordinator. She was instrumental in helping bring about the
carcinoid cancer/neuroendocrine tumor support groups throughout the
United States and was extremely proud to see the number of support
groups grow from the first support group in 1996 to over 40 groups today.
Mrs. Warner was also solely responsible for The Carcinoid Cancer
Foundation’s outstanding website. She created the site in 1996 and it grew
under her leadership to serving individuals from 119 countries worldwide.
Nearly 1,000,000 people have visited the CCF website since its
inception.
In
addition to her work with the foundation, Mrs. Warner was a registered
dietitian, certified dietitian-nutritionist, and certified diabetes
educator, with a Master of Science degree in Nutrition and Public Health
from Columbia University
in New York City and a Bachelor of Science degree in Food and
Nutrition from Teachers College in Stockholm, Sweden. She had a
private nutrition practice; worked at St. Agnes
Hospital in White Plains from 1982 to 1987, where
she was the Nutrition Education Coordinator; and served as an adjunct
professor in nutrition at Westchester Community College. Earlier
in her career she was a nutritionist for the Dairy Council of Metropolitan
New York, a research nutritionist at Albert Einstein College of Medicine in
the Bronx, and a clinical dietitian for the Swedish Consul
General in New York City.
A
Renaissance woman, Mrs. Warner had a wide variety of interests ranging from
speaking four languages to a passion for both photography and flying. She
earned her private pilot’s license in 1988 and flew several types of planes,
including a stunt plane. Last summer, she participated in a National
Geographic photography program in France, where her photographs
were selected as among the best by trip participants. Her photographs have
long been seen on the Carcinoid Cancer Foundation website, particularly from
conferences throughout the United States and in Europe.
Mrs. Warner is survived by her husband Richard R.P. Warner, M.D., Professor
of Medicine at The Mt. Sinai School of Medicine in New York and Medical
Director of The Carcinoid Cancer Foundation; daughter Nancy Coste, her
husband and their two children of Brussels, Belgium; son Charles Falker, his
wife and their two children of New Rochelle, New York; Dr. Warner’s four
children, Dr. Jon J.P. Warner, his wife and their four children of Weston,
Massachusetts; Keith R.P. Warner and his daughter of Denver, Colorado;
Douglas C.P. Warner, his wife and two children of Portland, Oregon; Lynn S.
Unipan, her husband and their two children of Ambler, Pennsylvania; and
longtime household member Elisabeth Herche. Mrs. Warner also has many
brothers and sisters and extended family living in Sweden.
In lieu of flowers, it was Mrs. Warner’s wish to enable the continuation of
the many activities of The Carcinoid Cancer Foundation and donations can be
made in her memory to The Carcinoid Cancer Foundation, 333 Mamaroneck
Avenue, # 492, White Plains, NY 10605 or online at
http://www.carcinoid.org
(click on the Donate Now button on the home page) with a Visa, MasterCard or
American Express, or by calling 888-722-3132, Tuesday through Thursday, 10
am to 4 pm, Eastern Standard Time. Services for Mrs. Warner will be held
privately.
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Posted
in behalf of E A Woltering, MD, July 2, 2009:
ZEBRAS AND NETS AND “ALL Y'ALL”
Recently I met with Susan
McMillian from the Patrick F. Taylor Hope Lodge (ACS) here in New Orleans.
As you know the Hope Lodge has
provided a home away from home for many of our patients being cared for here
in New Orleans. What I didn’t realize is the scope of the
care that they have provided over the last three years since we opened our
doors in the New Orleans area.
To date
they have provided shelter to over 200 of our patients. The total number of
night-stays provided for 2007 was 52. In 2008 they
supplied 639 room/nights for our patients. I have to tell you that I
gasped out loud when Susan told me that the Hope Lodge had provided
991 room/nights for our patients so far in 2009. If you consider that the
average hotel room in the New Orleans area costs $90 per day this
is almost $90,000 worth of free rooms for 2009 and over $150,000 for the
three years they have been supporting our patients who travel to
New Orleans for their care.
As everyone knows the economy in
the USA is significantly depressed and many of our patients can’t afford to
travel long distances for
medical care and to put their family up in a hotel while they recover from
their surgery or other treatments.
I am
personally asking for your support for the Patrick F Taylor Hope Lodge in
New Orleans----even if you have never used this facility. If
facilities like this close, the overall care of NETS patients will be
impacted in an extremely negative fashion. As it currently stands - over 30%
of the total care provided by our local Hope Lodge goes to NETS folks. Would
you please consider even a small gift to help support this group?
I thank you in advance for your
donation. If you can’t donate money maybe you can send Susan and her staff a
note telling them how
much you appreciate the care and compassion that they show our fellow NETS
patients.
I hope all of you have a great
4th of July and stay safe. Thanks in advance for your support of the Patrick
F. Taylor Hope Lodge.
Please make all donations out to:
The Patrick F. Taylor Hope
Lodge HOMECOMING 2009
2609 River Road
New Orleans La 70121
PLEASE BE SURE TO NOTE ON THE
CHECK THAT THIS IS FOR "HOMECOMING 2009"
---- THIS WILL ENSURE THAT 100% OF THESE FUNDS WILL STAY IN NEW ORLEANS AT
THIS HOPE LODGE
Thanks in advance for your help and support,
EUGENE A. WOLTERING MD FACS
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http://www.carcinoid.org/content/survivor-stories
Personal survival (winner) stories, Websites & blogs
Many personal websites contain additional valuable information about
carcinoid and related neuroendocrine tumors --survivor stories -- medical
information, support group schedules, patient conference schedules,
treatment tips, newsletters, reports from patient conferences, lecture
transcripts, videos, and much more. These websites range from personal and
support group sites both national and international.
United States
-
"My Carcinoid Story" by Susan Anderson

La Grande Dame de Carcinoid
This is the first and oldest online personal website created in 1997.
Susan is a carcinoid patient and awareness advocate way beyond that
time. Her website has a wealth of information and should be one of the
first personal websites you should visit. She is a longtime Carcinoid
and Breast Cancer survivor with an aggressive approach to maintaining an
active and lifestyle.
"I was diagnosed with Infiltrative Ductal Carcinoma (IDC) Breast Cancer
on June 18, 1999. There is NO connection to Carcinoid, this is
completely different! I had a lumpectomy, and did 33 sessions of
radiation, but no chemo. I went for mammogram every 6 months for 5 years
and now go each year. All is well. Getting those mammograms is very
important, do it gals! More on my web site
www.carcinoidinfo.info
I am a 10 year survivor, but I do not like the word survivor,
how about
winner!"
"Lead a full and
active life while LIVING with Cancer" is her motto. -
You will find many additional personal web-pages on her site as well as
information and links to medical/drug databases, support groups, humor,
books, music, prayer lists, travel, political issues, AZ info, cowboy
poetry, and much more!
READ MORE on
Susan's Blog
http://www.azcentral.com/members/Blog/sunnysusan/50634?&wired
What Monica Warner had on the web site … she added
“winner” in May 2009.
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About the Carcinoid Cancer Foundation (CCF)Foundation
Our
Mission:
REACH for a CureResearch,
Education,
Awareness,
Compassion,
Hope

The first and oldest carcinoid cancer/neuroendocrine tumor (NET)
Foundation in the US, Founded in 1968
Celebrating More Than 40 years of service to the
carcinoid/NET community
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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/
A Webinar with Dr. Richard R. P. Warner, MD
"
Carcinoid & NET'S : An Overview of Current Management in The United States"
To view this webinar
go to
www.carcinoidawareness.org Click on replay webinar page (link on left side of page)
Dr. Richard R. P. Warner, M.D. is Medical Director of the Carcinoid Cancer Foundation. Professor of Medicine, at The Mount Sinai Hospital and School of Medicine with his focus of activity entirely devoted to clinical practice,
teaching and development of a Center for Carcinoid and related Neuroendocrine Tumors, at The Mount Sinai Hospital and School of Medicine Email:
carcinoidaware@aol.com)
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Susan Anderson speaks in Northern Calif. Sept 20,
2008
NorCal CarciNet
Support Group http://www.carcinoid-net.org/
Date:
Saturday, Sept. 20, 2008 Time:
1 pm - 4 pm Place: The Wellness Community 3276 McNutt Ave,
Walnut Creek, CA 94597 Phone (925) 933-0107
Susan is known
throughout the Carcinoid/Neuroendocrine community as a true fighter for
carcinoid/NET awareness and of giving selfless hours helping others who
battle this disease.
Susan Anderson an
advocate for Carcinoid and Neuroendocrine Cancer Awareness
Susan Anderson is a
patient with Carcinoid, diagnosed in 1995. She has achieved much for the NET
community since her diagnosis. In 1997 Susan created and placed the very
first patient maintained web site about Carcinoid on the internet. Susan
use to answer every email personally but with over 271,360 hits she no
longer can do that, but does respond to many.
Susan attended the
first Carcinoid Conference in Sarasota, Florida and since has attended and
often spoke at most all future conferences for Carcinoid. She was on the
board of directors for the Southern California Carcinoid Fighters Support
Group and assisted in putting together the first California conference in
Santa Ana.
Her talk will be full of
useful information for patients dealing with carcinoid, as well as breast cancer of
which she also is a survivor.
For more information please contact; Jeanette at (530) 822-5422 or
cancerfighter@sbcglobal.net
NorCal
CarciNet Support Group
http://www.carcinoid-net.org/
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The
RUN FOR HOPE 5K has brought Carcinoid Cancer to the front lines of
the battle against cancer. This year the month of
July has
been designated as “Carcinoid Awareness Month” in the
State of Colorado by Governor Ritter. This year the month of
July has been designated
as “Carcinoid Awareness Month” in the City of Fort
Collins and this year the “Lee Curtis Memorial Run for Hope 5k”
will be more important than any other year. WE ARE GETTING CLOSER TO BETTER TREATMENT…and YES WE ARE GETTING CLOSER TO
THE DAY WHEN CANCER WILL BE NO MORE!
JOIN US FOR THIS POWERFUL DAY
OF HOPE, ENERGY & EXCITEMENT July 26th 2008 – City Park Sign
up on line - active.com the Foot of the Rockies or Runner’s Roost in Fort Collins, and
www.runforhope.net
Forever
grateful Jeanne Lambert Coordinator of Run for Hope
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Carcinoid Cancer Foundation, Inc. (CCF)
CCF 11th
Annual Carcinoid/NET's Conference For patients, caretakers and medical professionals
"Progress in Research and Treatment" (poster)
April 13, 2008 Mount Sinai Hospital New York, NY Guest Speakers:
Herbert Chen, M.D., University of Wisconsin Paul P. Carbone Comprehensive Cancer Center Madison, Wisconsin
Andrew S. Kennedy, M.D., Wake Radiology Oncology Cary, NC;
d. Networking and survivor stories For more information click on the following links:
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Carcinoid Conference in Harrisburg, PA!
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)
Teresa Lanza Pennsylvania Carcinoid Cancer Advocacy Network
CarcinoidSupport@juno.com 717-576-5095
PCCAN.net
+ + + + + + + +
NEW - I "Sunny Susan" was invited to write
a Blog
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. You may go to my Blog at
http://www.AZcentral.com/members/Blog/sunnysusan
May need to go to archive for each month on right side below my photo to open older Blogs.
05/12/2008
Poem: Friends Without Faces
http://www.azcentral.com/members/Blog/sunnysusan/23352
05/12/2008
13th Anniversary of Carcinoid Diagnosis May 10, 1995
http://www.azcentral.com/members/Blog/sunnysusan/23351
04/28/2008
Neuroendocrine Tumor assistance via web page for 11 + years
http://www.azcentral.com/members/Blog/sunnysusan/22544
04/19/2008
Book
Discussions in Arizona (1983 – 2008)
http://www.azcentral.com/members/Blog/sunnysusan/21868
04/10/2008
The Best Things In
Life...Aren't Things
http://www.azcentral.com/members/Blog/sunnysusan/21236
+ + + + + + + +
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/
* * * * * * * * * * * *
The
non-profit organization: Florida Carcinoid Support Group, the "Florida Zebras.Org", has published the first annual Zebra Calendar to raise funds for Carcinoid and NETS Cancer Research.
Click on the SHOPPING tab or write an
Email to:
order@FloridaZebras.org
Price: $15 including shipping!
* * * * * * * * * * * *
* * * * * * * * * * * *
The recorded version of the Web seminar Diagnosis & Treatment of Carcinoid Cancer & NETs
on December 15, 2007
Go to CCAN web site:
http://www.carcinoidawareness.org)
If you have comments or questions, contact the
seminar host, Robert Wahmann, at:
carcinoidaware@aol.com
* * * * * * * * * * * *
Carcinoid Conference, Norfolk, VA Sept. 2007
Webcasts from the Carcinoid NETs Conference in Norfolk Virginia
These recordings were produced
at the Carcinoid NETs Conference 2007,
held in Norfolk Virginia, and supported by the Carcinoid Cancer Foundation
* * * * * * * * * * * *
ASCO Exhibit in
Chicago, June 2007
American
Society of Clinical Oncologists (ASCO)
Slide show (NO
LONGER AVAILABLE)
Picture page
(NO LONGER AVAILABLE)
* * * * * * * * * * * *
Video Recordings and Lecture
Transcripts of Local and National Patient Carcinoid/NET
Conferences
* * * * * * * * * * * *
There was a one day
Carcinoid / Net Conference to be held on Saturday
June 16th at the
Pasadena Hotel. The program includes Dr Eugene Woltering and Dr Lowell Anthony from New Orleans LA.
These events will include a Dr from the area and a patient panel.
Tentative agenda is posted however times are subject to change.
So please check the site for updates. CCAN is very excited that we
have a opportunity to work with the wonderful Carcinoid Support groups from CA. Please register early as space is limited .
To find out more information or to register please go to _
WWW.CARCINOIDAWARENESS.ORG_
Also watch for updates regarding The CCAN and the MI support groups Conference to be
held on Saturday August 25, 2007 at the University
of Michigan Towsley Center, Ann Arbor. Registration will open soon for this
event. The funding for these events has been provided by grants from
both The Carcinoid Cancer Awareness Network INC ( CCAN ) and Novartis. Any questions please feel free to contact the CCAN office. Maryann Wahmann, VP Carcinoid Cancer Awareness Network Inc 2480 Hull Ave N. Bellmore NY 11710 Phone: 516 781 7814
http://www.carcinoidawareness.org
* * * * * * * * * * * *
June 2007
Dear Friends,
Some of our past supporters have told us they thought that CCF and
CFCF were both either same or closely collaborating organizations.
Please see letter below which I sent to such a former contributor in
response to her answer to my question why she switched her
contribution to CFCF instead of CCF. Please let’s discuss this issue
at the board meeting tomorrow.
Monica
Dear Amy,
Thank you very much for your e-mail and explaining your reason
for supporting the Caring for Carcinoid Foundation. I appreciate
your openness and your kind words. Congratulations on the birth of
your son! I wish you a lifetime of happiness with the newest
addition to your family.
In response to your question, I would like to explain that
funding that goes to the Caring for Carcinoid Foundation and funding
for the Carcinoid Cancer Foundation is not actually earmarked for
the same purposes. Nor do the two foundations work together.
The Caring for Carcinoid Foundation, formed only three years
ago, chose a name that closely resembles that of the Carcinoid
Cancer Foundation, established nearly forty years ago. Even our
acronyms are extremely similar, CFCF (Caring for Carcinoid
Foundation) and CCF (Carcinoid Cancer Foundation). While both
foundations are devoted to carcinoid patients and their families,
our goals are very different and the means of achieving these goals
differ as well.
The money contributed to the Caring for Carcinoid Foundation
goes for funding one narrow area, that of genetically oriented
research to find a cure for small intestinal carcinoid tumors in the
next ten years, a figure that has already been revised by the Caring
for Carcinoid Foundation. This is a good and commendable goal but
one that is not considered realistically obtainable within the next
decade or two in the opinion of many carcinoid specialists and of
those doing this research.
We at the Carcinoid Cancer Foundation believe that it is
crucial to focus on better awareness of the disease and other
related neuroendocrine tumors, earlier diagnosis, better diagnostic
tools, and better use of treatments currently available. We are
also committed to education and research on ALL of the locations of
carcinoid, including lung, stomach, thymus gland, pancreas, colon,
rectum, and ovaries (each of these have unique characteristics),
with the ultimate goal of finding a cure.
Attention must also be directed to the carcinoid syndrome
itself and to other related neuroendocrine tumors and their
syndromes, such as Gastrinoma, VIPoma, Insulinoma, Glucagonoma,
etc. Further, we believe there is the need for better use of
existing treatments, as well as the development of new treatments,
to improve the quality of life for carcinoid sufferers, and most
important, to prolong their survival.
In our
opinion, the areas listed above receive only token attention by the
Caring for Carcinoid Foundation, whereas the Carcinoid Cancer
Foundation strongly supports all these goals, as well as research on
new diagnostic methods and all
varieties of research directed towards a cure.
While the Carcinoid Cancer Foundation, which has existed for
close to forty years, often has worked on the aforementioned goals
on a shoestring budget, we are very proud of the goals we have
accomplished and the research we have funded. We are not driven by
a race against time to aggressive fundraising, though we certainly
need and are very grateful for contributions to continue our
research, carcinoid/NET awareness campaign, and support activities.
That the affairs of the Carcinoid Cancer Foundation are judged to be
conducted in an ethical, honest and open manner is attested to by
the Foundation being granted the Better Business Bureau’s seal of
approval (http://www.give.org).
The
Carcinoid Cancer Foundation policy has always been to keep separate
all support, educational, and research activities from fundraising
solicitations. For example, we do not sponsor a lecture or
scientific conference and concurrently at the same venue solicit
contributions. We focus on accomplishing results for meaningful application
now, not just promises for
the future.
We are so very appreciative of your support of the Carcinoid
Cancer Foundation and your continued commitment to the carcinoid
community. Please let us know if we can be of assistance to you at
any time in the future.
Very Truly Yours,
Monica Warner MS,
RD, CDN Research Coordinator and Director of Development Carcinoid Cancer Foundation, Inc. 333 Mamaroneck Avenue # 492 White Plains, NY 10605 Tel: 888-722-3132 URL:
http://www.carcinoid.org |
Serving the
carcinoid/NETs patient
and medical
community since 1968 |
|
* * * * * * * * * * * *
Photos now available from the first Zebra Ball
Click Here
The
Second annual benefit event
The
Zebra Ball (tm) - Stars for the Stripes (tm)
will
be held February 9, 2008
http://www.thezebraball.com
* * * * * * * * * * * * February 10, 2007
the first annual benefit event
The Zebra Ball (tm) - Stars for the Stripes (tm)
will be held, in Chicago, IL, to support
The Carcinoid
Cancer Foundation, Inc. a non-profit organization with a mission to encourage and
support research in addition to educating the general public and healthcare professionals regarding carcinoid
and related neuroendocrine tumors. For details, and updates, frequently check the web site
http://www.thezebraball.com
* * * * * * * * * * * *
WEBCASTS of lectures
from the Philadelphia patient conference are now online
The National patient Carcinoid/NET
Conference 2005 was held on September 22, 23, 24th in Philadelphia, PA
This conference was videotaped and all lectures are
now available. To view webcasts of the lectures and photos from the Philadelphia
conference go to:
http://www.carcinoid.org/news/index.shtml
+ + + + + + + + + +
NET NEWS, Vol
1, Issue 1, Winter-Spring 2006
Published by The Carcinoid
Cancer Foundation, Inc.
You can access this newsletter
from:
http://www.carcinoid.org/news/index.shtml
The
Carcinoid Cancer Foundation (CCF) has existed for close to forty years.
In 1997 it produced its first website which made available to the
general public and the medical community information about carcinoid and
related neuroendocrine cancers. The incidence of these rare cancers is 3
new cases diagnosed per 100,000 people in the United States which equals
approximately 8000 new cases per year. The philosophy of CCF has always
been to disseminate accurate, up-to-date information about diagnosis,
treatment, and surveillance options to maximize survival and quality of
life for those individuals suffering with these diseases. We strive as
the multitude of carcinoid/NET national and international experts have
been doing (some for decades) to find a cure. In the meantime we must
focus on educating the medical community to find the best diagnostic and
treatment options available. CCF has and is working closely with both US
and international medical experts and support groups. Many people may
not be aware of all the various activities in which the Carcinoid Cancer
Foundation is involved. This first newsletter enumerates CCF's role in
patient advocacy, research, and dissemination of medical information and
gives a summary of accomplishments in the year 2005 and plans for the
year 2006.
Without your
collaboration our accomplishments could not have been possible.
+ + + + + + + + + +
The Carcinoid Cancer Foundation, Inc.,
has a nice section to their web page under Awareness called "Show Your Stripes". These products
are available for local chapters to raise awareness of Carcinoid and other Neuroendocrine tumors (NETs) and for fund raising projects.
CLICK HERE
+ + + + + + + + + +
Carcinoid Cancer Awareness Network, Inc. (CCAN) have put up a very
nice web site and shall be adding to it from time to time, as we all do.
Visit their web site:
http://www.carcinoidawareness.org
+ + + + + + + + + +
What’s Tried
and True – What’s New?
Symposium for patients, caregivers, family, friends, & medical professionals
Guest Speaker:
James C. Yao, MD,
MD Anderson Cancer Center, Houston, TX
Sunday, April 2, 2006
1:00 – 5:30 pm
Mount Sinai Hospital, New York, NY
For more information and to register (click on link):
++++++++++++++++++++
The NECC is excited to be
hosting a Regional Carcinoid/Neuroendocrine
Tumor Conference to be held in
the
Boston area on
June 16th 2006.
We are fortunate to have as our keynote speakers
world renowned researcher,
Judah Folkman MD
and
Matthew Kulke MD.
For more information about
New England Carcinoid Connection
and its upcoming
conference, please
++++++++++++++++++++
NEW - posted Feb. 13, 2006
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
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.
++++++++++++++++++++
Used with permission
from the author
Leslie H. Sobin M.D., FRCPath
+ + + + + + + + + +
Dec. 2005 .... Below is the letter Gradon has composed to assist him in his
community service project for the National Junior Honor Society of Sinaloa
Middle School, Simi Valley, CA. So far he has sold more than 100 books.
You
may contact
him via his mother Karalyn Faulkner email:
kfaulkner4@adelphia.net.
Dear Friends,
I am asking you to donate money toward the purchase of one of the
very first books on diagnosing carcinoid cancer. A lot of doctors do not
know enough about carcinoid cancer symptoms and what to look for to diagnose
it. So, if a person comes to see them and they have read the carcinoid book,
they can help that person correctly and help protect them instead of hurting
them more. If you send me the money I will make sure the books we purchase
gets into the hands of doctors who do not know enough about carcinoid
cancer.
My dad has carcinoid cancer and was diagnosed with it in April of
2004. He had severe pain. The doctors thought it was from a kidney stone
but when they went in to get it, there was a tumor not a stone. He went to
a lot of different doctors and one finally knew what he had. He told us he
has carcinoid cancer and it is the slowest growing cancer. Also, he was told
not to worry about it yet because it would be a long time before he had to
do anything. My mom went online to find out more about it. She found out
that it was not true! He had to do something right away. He had to see a
specialist in his cancer. She found out that one of the best doctors who
deals with his cancer was in New York. We saved up all summer to go there
that fall. We had a lot of help from our family, friends and neighbors.
Some friends donated money and some donated airline miles. All of our
neighbors held a huge garage sale and made money for us. Last fall we went
to New York to see the specialist, Dr. Warner. He told us all about
carcinoid cancer and what to do about it. My dad is still working on getting
his cancer better.
My dad was very lucky to find out about his cancer and lucky to
have my mom find out the RIGHT information about carcinoid cancer. The
books cost $15 a piece. Please help me purchase the book made for
diagnosing carcinoid cancer and getting people with this illness the help
they deserve. Together I hope we can help save people time, money and
especially their lives by giving more doctors information.
Thank you very much,
Gradon Faulkner
Please make checks
payable to : Healthcare Foundation
+ + + + + + + + + +
The
adult children of David Hanson, who died of Carcinoid Cancer
on September 23, 2001, are entering into charity races to honor him.
-
Daughter Melissa Hanson Wright will participate in the Seagull
Century, a 100 kilometers
bike race in Salisbury, MD on October 8, 2005. Melissa and her
husband will be raising
money and awareness for the Carcinoid Cancer Foundation. More info
and photos shall be
posted when available.
- David Hanson Jr. and sister Laura Hanson shall run the Chicago
Marathon in memory of
their father, David Hanson, on October 9, 2005.
Donate
to the Carcinoid Cancer Foundation on-line by clicking on this
LINK
+ + + + + + + + + +
Lance
Armstrong Foundation's (LAF) Ride for the Roses, Oct. 21 - 23, 2005
I have
joined the 2005 Peloton Project and will ride in the Ride for the Roses
October 21-23, 2005. The Peloton Project is the Lance Armstrong
Foundation's (LAF)
major grassroots fundraising and outreach project. Comprised of
cyclists, cancer survivors
and other volunteers who want to make a difference in the fight against
cancer, members
raise funds and awareness for the LAF in their local communities.
My
mother,
Dawn Decker, is currently battling
carcinoid cancer
and several
other family members are either cancer survivors, are still fighting it
today, or have lost their life
to cancer. Seeing how cancer has affected my family, friends and
others, I have decided that
it is time for me to do my part to make a difference.
I plan to
complete the 75 mile ride in the 2005 Ride for the Roses held in Austin,
TX,
October 21-23, 2005. This ride will definitely push me to the
limits as I have never attempted
such a feat but I know that I will only experience a fraction of what my
mom and other cancer
survivors worldwide live each and every day of their lives. By riding
in this event, I will be
helping the Peloton Project assist people living with cancer and also
aid in the cancer research
led by the Lance Armstrong Foundation to hopefully one day rid the world
of these evil diseases.
I have started my part, now it’s time for you to do yours.
When you
sponsor me in this ride, you will be showing your concern and support
for
cancer survivors and their loved ones. I’m sure each and every one
of you can say your
lives have been touched someway by a person battling cancer. This is
your way to say, “I care
what you have gone through. I want to help.” Donations can be large
or small…every
dollar counts. You can go to
http://www.livestrong.org/peloton and donate
to Peloton
Member ID# 90252740 or talk to me (979-739-1511) about other
ways to donate.
Donations have to be in by September 16, 2005.
I want to thank you for helping support me in this ride not only for
myself, but for my
mom, Dawn, and everyone else who is fighting a battle that they should
not have to fight.
And hopefully with our help, one day they won’t have to. Thank you and
Live Strong.
Respectfully,
Justin Decker
Texas A&M Class of 2005
+ + + + + + + + + +
CCAN SECOND ANNUAL DINNER DANCE
Friday Nov. 11, 2005 from 7 PM -11 PM.
at the Bellmore Knights of Columbus. The cost will be $80 per
person. This includes a Buffet dinner and a full open Bar. There will
be a
DJ for your listening pleasure as well as for dancing. The evening will
be
filled with raffles including 50/50 and many great prizes. We will also
have a
sports and entertainment memorabilia silent auction.
All Profits will be used for awareness projects and research both at
the
local and national level.
Anyone attending the dinner dance is invited to be our guest for a
medical
seminar open to anyone wanting to know more about Carcinoid Cancer .A
sit
down lunch will be served.
Our special guest speaker a renowned Carcinoid specialist
Eugene Woltering, MD
November 12, 2005
10:30 AM -3:00 PM
Marriott Hotel, Uniondale, NY 11553
To attend just the medical seminar the cost will be $15 per person.
Space is limited So please RSVP by NOV 2
Please make all Checks payable to CCAN INC and mail to 2480 Hull Ave N.
Bellmore NY 11710
Anyone interested in nearby hotel information and rates please contact
me.
Maryann Wahmann
VP Carcinoid Cancer Awareness Network INC. (CCAN)
Chair of the LI NY Carcinoid Cancer Support Group
Carcinoidaware@aol.com
+ + + + + + + + + +
I wanted to share the status on the fundraiser CCAN had started
to help Dr
Woltering and Dr Anthony with their research Lab.
First I like to thank all of you that have sent in the donations.
CCAN has donated 5,000 to start the fundraiser off . CCI (Connecticut
group) donated $1,000. To date we have received $1,150 private
donations. Bring
the total to $7,150. I will be mailing a check over the weekend to Dr
Woltering.
If you would like to make a donation. Please mail a check made out to
CCAN
mail to 2480 Hull Ave N. Bellmore NY 11710. Please write LSU fund in
memo
area
Maryann
516 781 7814
(Above posted 13 October 2005)
+ + + + + + + + + +
SEA (Support,
Education & Awareness for Carcinoid
Patients) has published a concise, referenced, pocket
guide to the diagnosis and treatment of Carcinoid, co-
authored by Richard Warner, MD and Chip Rueben, MS.
The book, Titled
Carcinoid Tumor: A
Guide to Diagnosis
and Treatment. The book is a 5"x7",
tabbed, spiral
bound, booklet. The goal of SEA in producing this guide
is to make these books available to as many physicians
as possible. To obtain details on ordering a copy of this
book contact Nickolette Way (818)951-3995 or Nik
Neville (909) 982-8709 or
email at:
sea4carcinoid@msn.com
First posted June 18, 2005.
+ + + + + + + + + +
Carcinoid
Cancer Awareness
Saturday, August 13th, 2005
8:00 a.m. at Fort Collins, CO City Park
HELP US
RAISE MONEY TOWARD CANCER AWARENESS AND RESEARCH
for the
Caring For
Carcinoid Cancer Foundation
and the
Poudre Valley Hospital Foundation Cancer Project.
Link for the web
site CLICK HERE
Activities: 5K and 1 Mile fun run/walk; Live
music by the "Altered Ego's"; Children's Jump Castle; Free Food and Drinks;
Roadside Entertainment; Prizes for age bracket winners of all ages.
Award ceremony after the race!!
Educational Exhibits.
Register Online or at:
jeanne@runforhope.net
+ + + + + + + + + +

+ + + + + + + + + +
Judy Golz, a carcinoid patient from the New
Jersey support group,
was featured on "Mystery Diagnosis",
Monday, November 15, 2004,
on the Discovery Health Channel at 10 p.m.
EST.
+ + + + + + + + + +
+ + + + + + + + + +

+ + + + + + + + + +

+ + + + + + + + + +
Julie dedicated her Mitzvah (Good Deed) Project to
helping patients with Carcinoid/NET Cancer, raising nearly $10K for the
Carcinoid Cancer Foundation, which benefits all of us. Julie’s good deed
was entered into a competition by Kohl's Department Stores, awarding the
winner a $5K College Scholarship + $1K to the charity of their choice. She
won first place at the Store Level and is going on to Regional!


My Carcinoid Mitzvah (Good Deed)
Project
Hi. My name is Julie Beth Greenwood
and I am eleven years old. I will become a Bat Mitzvah, “Daughter of the
Covenant,“ in December 2004. For my Mitzvah (good deed) Project I have chosen to
raise money to help support the research of the Carcinoid Cancer Foundation. It
is important for me to do this because of my Dad’s situation.
When I was eight years old my
father was diagnosed with a very rare cancer called Carcinoid. I am very
frightened and sad. I do not want my father to die. Because the Carcinoid Cancer
Foundation was able to do research, my Dad is still here today. Dr. Warner
introduced my father to Chemotherapy and Octreotide. After that my Dad had
several treatments called Chemoembolizations.
It is very important to me to raise
as much money as I possibly can. Please help me to help my Dad, and so many
other wonderful people, live. Your donation will go to the Carcinoid Cancer
Foundation (a tax-deductible non-profit organization) so they can do more
research and find new treatments. I will be very grateful for any donation, big
or small.
Thank you for taking a little time
to make a big difference!
Shalom.
Julie Beth Greenwood
Chandler, Arizona

* Note from Dad:
The Carcinoid Cancer Foundation performs needed
research and disseminates important information on diagnosis and treatment of
this rare condition throughout the medical community and to the Carcinoid
patient community at large. Due to the rareness of this disease, patient access
to this information is often paramount to receiving the proper care and/or
treatment. In this regard, the Foundation serves as a lifeline for the patient
and a phenomenal resource to the medical professional who may have never
treated, nor ever seen, a case of Carcinoid Cancer in their career. In addition,
the Foundation also provides a short list of (too few) Carcinoid
Experts/Specialists who have amassed extensive knowledge and experience in
diagnosing and treating this disease, and who can assist the patient and medical
professional in implementing an appropriate treatment strategy, utilizing
medicines and procedures which research prove most effective. And, if that’s not
enough, the Foundation also coordinates, facilitates and supports ( together
with other groups ) Symposiums / Conferences annually, featuring the latest
research in diagnosis and treatment of Carcinoid Cancer, presented by the
world’s leading Carcinoid Experts/Specialists, rotating it’s location yearly, so
that medical professional and patient, alike, from all parts of the country may
attend. Last, but not least, the Foundation also strives to educate the medical
community so that earlier diagnoses may occur before metastases (spread)
precludes the only known cure for Carcinoid; 100% surgical removal of tumor.
This tax-free, non-profit, organization deserves our financial support to
continue its very important mission, for which no other entity duplicates.
Without the Carcinoid Cancer Foundation, I don't think many of us would have a
very good prognosis or quality of life. Please support the Carcinoid Cancer
Foundation by making a donation in honor of Julie’s Bat Mitzvah. Thank you!
Robert Greenwood
TO MAKE A CONTRIBUTION TO THE
CARCINOID CANCER FOUNDATION BY MAIL, BY CREDIT CARD OR ONLINE
PLEASE NOTE:
MAKE THIS CONTRIBUTION IN HONOR OF
JULIE GREENWOOD
THE RESEARCH, EDUCATIONAL AND
SUPPORT ACTIVITIES OF THE CARCINOID CANCER FOUNDATION ARE
MADE POSSIBLE BY YOUR CONTRIBUTIONS.
THANK YOU!
+ + + + + + + + + +

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 20 years old on April 27, 2017.
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
* * * * * * * * * * *
*
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 © 1997-2017 Susan L. Anderson. All Rights Reserved.
|