The Healing NET Foundation is dedicated to providing information to NETs patients. See below for a variety of resources that may be helpful to you, the patient, on your NETs journey.
- Natural History of Familial Carcinoid Tumor: https://www.clinicaltrials.gov/ct2/show/NCT00646022?term=NCT00646022&rank=1
- Ga68 Map https://norcalcarcinet.org/ga68map
- Loveable Lungnoids (Lung NET FB support group) www.facebook.com/groups/lovablelungnoids/
- Neuroendocrine Cancer Awareness Network (NCAN) - www.netcancerawareness.org
- Gastrointestinal Neuroendocrine Tumor (GI NET) - www.inspire.com/groups/gi-neuroendocrine-tumor-ginet/
- Lung Neuroendocrine Tumor (LungNET) - https://Lungnet.inspire.com
- The Carcinoid Cancer Foundation (CCF) - www.carcinoid.org
- Support Group Directory - www.carcinoid.org/support/support-groups/directory
- NorCal CarciNET Community - www.norcalcarcinet.org
- Carcinoid NeuroEndocrine Tumor Society Canada - www.cnetscanada.org
- Ipsen's KnowYourNETS - www.knowyournets.com
- Novartis Oncology Initiative's The NET Alliance - www.thenetalliance.com
- Los Angeles Carcinoid Neuroendocrine Tumors Society - lacnets.org
- Colorado Carcinoid Cancer Support Group - http://cccsg.net
- The Philly NETs group
We’re excited to introduce our Lung Neuroendocrine Tumor (LungNET) Support Community, a resource developed in partnership with Inspire and NCAN to help patients and caregivers affected by lung NETs share support and information. Inspire is a company that builds and manages secure and moderated online support communities for some 800,000 patients and caregivers. Click the link to join the LungNET conversations today! https://Lungnet.inspire.com
SEER Study on increased incidence of NETS
Dr. Thor Halfanarson of Mayo Clinic shared a SEER study showing statistics of increased NET cancer diagnosis, and improvement in survival in distance stage GI and pancreatic tumors. To read more click here
Xermelo (telotristat ethyl) for Carcinoid Syndrome
Xermelo (telotristat ethyl) has just been approved by the FDA for patient Carcinoid Syndrome patients controlling diarrhea.
Here's some tips provided by Lexicon--
--Does NOT take the place of long acting Sandostatin or Somatuline for patients controlling carcinoid syndrome diarrhea--this oral medication shows success in reducing rescue shots
--Biggest side effect is constipation (talk to your physician)
--Not available at your regular pharmacy. Dispensed by SHIPMENT from one of two speciality pharmacies-free 14 day starter kits available pending authorization once your provider prescribes this treatment.
--Financial assistance is available through LexCares for co-pays, Medicare/Medicaid patients, and those without insurance.
www.xermelo.com LexCares 1-844-Xermelo (937-6356)
NET Primer Informational Brochure
The Healing NET Foundation mission has two paths—serving the general medical community with good education and resources about NETs and serving the NET patients with resources that will help them advocate for themselves and better connect with their cancer physicians. We have found that our NET Primer for Healthcare Professionals, written by several NET expert physicians and patient advocate on our Scientific Advisory Committee, accomplishes both. It offers just enough info in peer to peer language to give physicians a better understanding of the rare disease but also is easy to read and understand by patients. It has become a popular request from NET patient support groups all across the country, and patients are taking it into their respective physicians as an additional resource.
Click Here to download your copy:
Facebook Interactive on-line group
NET Patients Sharing Knowledge & Experience - This focuses on NET information and has a large file section with lots of good info. This FaceBook group is sometimes monitored and answered by NETs specialists (You must have a FB account to access this information).
Dr. Liu's Zebras - Dr. Liu holds an informative question and answer session in this group on the first Tuesday of the month. The files sections holds documents with the previous questions and answers (You must have a FB account to access this information).
Carcinoid Coffee Cafe - Both Dr. Woltering and Dr. Liu (two well-known specialists) are in this group and occasionally will answer a question (You must have a FB account to access this information).
Carcinoid Connection FB page - Carcinoid Connection is an online community who helps people impacted by carcinoid cancer learn to cope and to connect with others also affected by it.