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.
2016 Neuroendocrine Tumor Patient Conference
Hosted by:UCSF Helen Diller Family Comprehensive Cancer Center
In cooperation with NorCal CarciNET Community, NET Research Foundation, Stanford University Medical Center
Sunday, January 24, 2016 - 9:00 am to 4:00 pm
Location: UCSF Mission Bay Conference Center. UCSF Mission Bay
1675 Owens St, San Francisco, CA 94158
Please join us for a day of discussion on the latest developments in neuroendocrine tumor (NET) research and treatment. Topics will include treatment options, clinical trials and phase III results, nuclear medicine and molecular imaging as well as strategies for living with cancer. Experts from around the world will be giving presentations and participating in Tumor Boards and extensive Q&A.
New this year - Pre Conference Primer on NETs - For those who are newly diagnosed or need a refresher on the basics of NETs - we will have a 30 min pre-conference overview on NETs. Please indicate your interest in this primer on your registration form.
We will also have smaller breakouts for caregivers and those that need a break from the main conference.
Open to patients, caregivers and those interested in NETs.
Thanks to generous funding by UCSF, there is no cost to attend this conference. Conference registration includes lunch and parking.
Registration ends on January 18, 2016
To register please click here.
On October 20, 2015 the Society for Nuclear Medicine and Molecular Imaging and the NorCal CarciNET Community hosted a webinar on PRRT featuring Dr. Ed Wolin and Dr. Eric Mittra. NorCal CarciNET's Josh Mailman facilitated the ensuing question and answer session. Over 95 participated in the webinar which can be viewed below. In addition the slides that were used are available by clicking here. Guidelines for the use of PRRT are avialble from the PRRTInfo.org website.
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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).
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.
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)."
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.