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.
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 maintainig 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
NEW Roger Wood son of DGW created this amazing blog, documenting step by step his fathers trials and tribulations living with carcinoid. A true educational voyage for both patients and caregivers. http://dgwhealthnews.blogspot.com/
After over a decade of suffering from Carcinoid Cancer, Sunny Carney has decided to fight back. She is currently preparing to undergo proven treatments in Basel, Switzerland. She has exhausted all the treatments here in the United States.
"My journey thru NeuroEndocrine Carcinoma cancer hell & adventures walking thru it.....!!!" A MUST READ. This blog contains multiple useful tips and information
This is my journey with the dreaded diagnosis of "CANCER". It documents my adventures to find the right treatment to a very rare form of cancer: neuroendocrine carcinoma- renal carinoid :( This documents my experiences in dealing with this "elephant in my room". Hopefully, it can help others (and myself) learn from the many challenges, pitfalls, errors and decisions made in dealing with the diease. I also want to use it to raise awareness for this diease and help in raising funds for the carcinoid foundation. Enjoy life! Steve M
This website has been created to share with you my
story. It’s a story about being diagnosed
with cancer. But not just any cancer - a rare form
of cancer, one that is normally diagnosed in people
twice my age. Many people have never heard of it,
most doctors are confused by it, and survivors are
just looking for a way to beat it. This is my story
about my ongoing battle with Carcinoid Cancer Kari Houston Jones
Carcinoid
Cancer - Al Simms's bio Written in everyday language with mainstream medical input. A Carcinoid Cancer Resource for the Layman. A superb personal website.
The author states:
"My purpose in creating these Carcinoid Cancer pages ...... is to provide a
resource for the non-medical person who has the disease, suspects that he may
have the disease or knows someone who has the disease. It is my hope that someone
who does not know he has the disease may recognize early symptoms and insist
that his or her Doctor run some simple tests to diagnose the disease. IF IT
IS CAUGHT EARLY ENOUGH IT CAN BE COMPLETELY CURED.
Larry Chinnery's Home Page June 2006. We mourn the departure of Larry from this earth.
Larry was long time Noid survivor has published an
amazing website. One of the goals with this website
is to provide direction to those searching for useful
information about carcinoid cancer and carcinoid syndrome.
Hopefully by using this site as you would a compass,
you will be able discover a great deal about this very
weird and somewhat rare form of cancer.
Eric's
Story of his journey through the carcinoid maze
Eric has been diagnosed and treated for a rare form of cancer called "Carcinoid Cancer". His personal website chronicles the saga of Eric's trials and tribulations on his journey from the day of diagnosis. This website is updated very frequently.He has finished his 4rth and final Lu-177 treatment as part of the study conducted by Prof Harvey Turner at Fremantle Hospital WA with reasonable good results.
Eric & Leonie Gully
Carcinoid & Neuroendocrine Tumor Society is an association of patients, caregivers and physicians, promoting better understanding of carcinoid and neuroendocrine cancer, a relatively rare disease which is poorly understood and is often misdiagnosed.
About CNETS Singapore
The association was formally registered on 9 April 2009 (ROS Number 2039/2009). The founders of the association are Dr. Paul Ho, Lam Wei Choong, and William Claxton. Founding members include local and foreign patients, and many prominent Carcinoid NETs specialist physicians in Singapore.
Sweden
Carpa
This Swedish carcinoid support group site contains many easily understood articles by some of the worlds foremost carcinoid/NET specialists. Three newly published articles in 2004 are: Lung carcinoids by Dan Granberg, M.D.
Vepesid/cisplatin-treatment by Marie-Louise Fjällskog, M.D. Diagnosis midgut carcinoid by Agneta H-Franzén, (A patient's perspective)
is a longtime Carcinoid and Breast Cancer survivor with an aggressive approach to maintainig an active and lifestyle.
Steve Murrah(left) with son Carlos.
