Support Group and Personal Websites




Personal Websites

Many other websites contain additional valuable information about carcinoid and related neuroendocrine tumors --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

  • Welcome to My Story
    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
  • "My Carcinoid Story" Susan Anderson's Home Page:
    Contains a wealth of information. You will also find many additional personal web-pages on this site "Lead a full and active life while LIVING with Cancer - info and links for medical/drug databases, support groups, humor, books, music, prayer lists, travel, political issues, AZ info, cowboy poetry, and much more!
    Created by a"Survivor of Carcinoid and Breast Cancer".

    Susan Anderson, a carcinoid patient and awareness advocate has maintained a website to provide information and support for the carcinoid community since 1996.
  • Carcinoid Cancer - Al Simms's website
    Written in everyday language with mainstream medical input. A Carcinoid Cancer Resource for the Layman. A superb personal website. Visual instruction on how to inject Sandostatin.

    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.
  • Carrie Snelgrove's Carcinoid Story 
    Good Evening Ya'll. Just wanted to let everyone know that I have updated my caring bridge website. Please take a minute and stop by
  • Gary Smith's Blog (Ann Arbor, MI)

Australia

  1. "An Australian Carcinoid Site"
    There are very few "patient-friendly" sites in Australia, that provide informational service for people who are affected by the Carcinoid illness. This site was created to fulfill this void, is intended to provide basic information regarding Carcinoid Cancer and is maintained by Brett Watson & Michelle Vincent
  2. 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..

    If you would like to have a look at what Eric is up to his blog is http://moonhaven.com.au/ericsstory/ . He is currently finishing 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.
    Gully_s
    Eric  & Leonie Gully

     moon haven’s founders 

    moon haven

    cnr bottrill st & bussell hwy

    Cowaramup 

    Western Australia

     

    www.moonhaven.com.au

     

    Phone: (08) 97 555 470

    Freecall: 1800 005 059

     

Sweden

  1. 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)

 


Last Modified: Sunday, 30-Mar-2008 17:59:03 EDT