Our mission is to help those with neuroendocrine tumors and carcinoid to share challenges and experiences, learn about prognosis and treatments, find information, and improve communications between the medical community, patients and caregivers. By providing opportunities for our members to connect with others who have these rare illnesses we will enable them not only to get their questions answered but also to give and receive emotional support. In addition, we aspire to bring greater awareness to the medical community and the public so as to promote earlier detection and treatment of these often unrecognized illnesses.
NorCal CarciNET Community is now a 501(c)(3) (Tax-Id 45-2968919)
Contribution made to our group are now tax deductible.
The results from the first large scale randomized control trial of PRRT were released today in Vienna, Austria showing increased progression free survival compared to high dose octreotide LAR.
PRRT while available in many parts of the world has not yet been approved for use pending prospective randomized clinical trails (RCT). Having a positive RCT for PRRT will greatly expand access and availability to PRRT around the world. Click here to download the full release.
In addition to the NETTER1 trial presented at the European Cancer Congress, two other phase 3 NET clinical trials presented their results.
Everolimus conferred a statistically significant and clinically meaningful PFS benefit with an acceptable safety profile in patients with advanced, progressive neuroendocrine tumors of the lung or gastrointestinal region, according to phase 3 trial results (Radiant4).
"This is the first randomized clinical trial to show any benefit in lung NETs," James C. Yao, MD, professor in the department of gastrointestinal medical oncology at The University of Texas MD Anderson Cancer Center, "There is no other treatment available for those patients. Outside the pancreatic area, there is really no approved treatment that shows any benefit for progressive NETs." To read more about this study click here.
The phase 3 results from the Telestar were also presented. "Telotristat etiprate represents a novel approach by specifically inhibiting serotonin synthesis and, as such, is a promising potential new treatment for patients whose lives can be significantly impacted by this debilitating condition," lead investigator Matthew H. Kulke, MD, director, Program in Neuroendocrine and Carcinoid Tumors, Dana-Farber Cancer Institute, said in a statement. "These results are exciting from both an efficacy and safety perspective for carcinoid syndrome patients." To read more click here.
NorCal CarciNET Community would like to celebrate the life of Edda Gomez-Panzani who passed on June 30, 2015. Edda was instrumental in gaining FDA approval for Somatuline (lanreotide) for NETs patients in December 2014. Edda loved working with the patient community and spoke at support group meetings around the world since joining Tercica (now owned by Ipsen). Her last support group presentation was to NorCal CarciNET Community in late 2014. She dedicated her life to working with those in need including medical aid-relief mission trips to Honduras, Mexico, Argentina, Peru, Liberia, Cambodia and Tanzania and three post-earthquake disaster relief tours in Haiti/Dominican Republic. Edda was at one time affiliated with the following aid-relief organizations:
• Remote Area Medical • International Medical Alliance • Feed the Children • Flying Doctors of America • Project Medishare (University of Miami Medical Center) • J/P Haitian Relief Organization• A Broader View.
On June 8, 2015, Josh Mailman, patient advocate, and president of the NorCal CarciNET Community, was honored with the 2015 Society of Nuclear Medicine and Molecular Imaging (SNMMI) Presidential Distinguished Service Award. The award reads, "For substantial contributions to the SNMMI patient outreach program and leadership of the Patient Advocacy Advisory Board (PAAB)." Josh served as the inaugural chair of the PAAB from 2013 until this year. The award was presented to Josh by SNMMI President, Peter Herscovitch. SNMMI is a 16,000 member nonprofit scientific and professional organization that promotes the science, technology and practical application of nuclear medicine and molecular imaging.
NorCal CarciNet Community is now approaching the end of its seventh year as an independent Carcinoid Neuroendocrine Community.
It has been another exciting year for us. In January 2014, NorCal CarciNet held its third annual NETs conference at UC Berkeley, which was attended by more than 150 community members.
The Society for Integrative Oncology has published a first-of-its kind breast cancer clinical practice guidelines in the Journal of the National Cancer Institute Monographs coinciding with the 11th International Conference of the Society for Integrative Oncology in Houston, Texas at the end of October. NorCal CarciNet Community President, Josh Mailman contributed a perspective on Integrative Oncology to the Monograph entitled "A Patients' Perspective on Integrative Oncology: Getting Past the "War," Living With and Beyond Cancer.
If you have health insurance, you have entered into a legal contract with your insurer. You make your payments and they should do everything written in the "contract". While it works well most of the time there are times you will receive a denial for a service or treatment. Don't give up – now you have to prove to your insurance company where in their contract it calls for the service or treatment you are requesting. First things first - you need your contract. Not everyone who has "XYZ" insurance has the same contract.