|
Resource Library
Updated: 27 April 2017
******************
27 April 2017 this web site was 20 years old, the 1st by a Carcinoid
patient!
********************
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.
********************
April 23, 2014
I began Dialysis
every evening at home
due to being Stage
5
Chronic Kidney Disease.
*******************
My memoir book
Becoming Sunny
Susan
is now available
in
softcover and
ebook! By Susan L.
Anderson
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.
* * * * * * * * * * * *
-
Jul 19, 2013 -
http://youtu.be/NiIDsVEiZQk
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.
* * * * * * * * * * * *
The
Carcinoid Heart Center
* * * * * * * * * * ** * * * * * * * * * * *
NET Guidelines from NANETS (North American
NeuroEndocrine Tumor Society)
http://nanets.net/research/articles/nanets-guidelines
Medical Imaging
Miracle House
(place to stay when travel to seek consultation and / or treatment)
RxMed - Family Physicians Site -
drug monographs
RxList - The Internet Drug Index
PharmWeb - Drug Information
Medical Glossary
Medical Dictionary from MedicineNet
General Medical Resources on the Internet
Ochsner Neuroendocrine Tumor
Team
Cancer Net
(formerly People Living With Cancer)
DocFinder - Assoc. of State Medical Board
Executive Directors
Univ. of Penn.'s OncoLink
Tumor Atlas
Irritable Bowel Syndrome
Medical Encyclopedia via MEDLINE
plus
Assisted Living Directory
Diagnostic
Imaging (useful for ALL people, not just those with cancer)
Laboratory
Tests (useful for ALL people, not just those with cancer)
Lab Tests On-Line
Journal of the American Medical Assoc. (JAMA)
Society of Interventional Radiology
(they do CE's and RFA's)
American Society of
Clinical Oncology (ASCO)
The Dartmouth Atlas of Health Care
Society of Nuclear Medicine
Standard clinical
guidelines for various procedures
Web MD -
more general medical information
Revolution
Health
National Organization of Rare Diseases
DocFinder - Assoc. of State Medical Board Executive Directors
Medicine Online
National Institute of Health's Office of
Alternative Medicine
Oncology information - Online action
against cancer
Today's
Caregiver Online
Advance Care Planning: Dorothy Garske
Foundation
Metformin (for diabetes)
AZ Hospice & Palliative Care
Nutritional Concerns For The Carcinoid Patient
Cancer & Nutrition
ASK The Dietitian: The Site for
Sound Nutritional Advice
Center for Science in the Public Interest -
Nutrition Action Healthletter
CyberDiet - answers questions about foods and a healthy lifestyle
Blonz Guide to Nutrition, Food and Health
Resources
Therapeutic Humor
Quack Watch -- battles health related (including diet) frauds, myths, fads, and
fallacies - VERY IMPORTANT!
National
Institute of Neurological Disorders and Stroke
(with warning signs)
Nutrition and Fast Food Facts
Implanted Venous Access Ports
Patient Advocate
Foundation
Susan Anderson's Home Library of Cancer / Healing / Wellness /
Medical Books
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
* *
* * * * * * * *
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
* * * * * * * *
* *
OF SPECIAL INTEREST FOR THE PHYSICIAN:
Information for your medical doctor and other medical professionals from CCF
General Information About Carcinoid and Related
Neuroendocrine Tumors -- WITH A BIG THANK YOU TO THE Carcinoid Cancer Foundation
(CCF). General Information About
Carcinoid and Related Neuroendocrine Tumors.
This section contains links to websites and
full-text and abstract versions of published papers that focus on general
information (reviews) of diagnosis, treatment and current research in the field
of carcinoid and neuroendocrine tumors.
Thank you to the Carcinoid Cancer Foundation,
Inc. (CCF), for giving me permission to link directly to this important
consensus report below.
Consensus Statements and Guidelines
"This
consensus report gives a detailed description of the use of somatostatin analogs
in the management of neuroendocrine tumors of the gastroenteropancreatic system.
As background information we have outlined critical aspects of the pathology,
the use of tumor markers, a definition of functional and non-functional
digestive neuroendocrine tumors, different imaging modalities, surgical
considerations, liver embolization and the use of cytotoxic drugs as well as
interferon. Included in the report is an overview of somatostatin, somatostatin
analogs and its receptor expression in different neuroendocrine tumors. It will
also define the binding affinities of different somatostatin analogs to the five
different subtypes of somatostatin receptor. We compare the efficacy of
octreotide and lanreotide in reducing diarrhea and flushing. Side-effects are
described and we provide practical information on somatostatin analog
treatment."
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 shall write 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.
Doing a Blog was fun, but it just took too much time so I stopped.
The following video interview is no longer on-line.Interviews on video made at the 2004 New
Orleans Carcinoid Conference
Some of the things discussion are answers to questions commonly asked by
newly diagnosed patients
Eugene A. Woltering, MD., Gregory D. Espenan, M.D., Daniel Frey, M.D.,
Susan Anderson, Carol-Anne Wilson, Jim Weiveris
Click here for the
video interviews (no longer available)
Click here to email me SunnySusan@Cox.Net
(Please see below)
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 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
nearly 50
years (chartered in 1968)
“Meets Extensive Standards of America’s Most Experienced
Charity Evaluator”
Better Business Bureau
* * * * * * * * * *
Return to top of homepage
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.
| 
