NorCal CarciNET Community
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.
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NorCal CarciNET Community is now a 501(c)(3) (Tax-Id 45-2968919)
Contribution made to our group are now tax deductible.
Passing of Aretha Franklin
The NET Commuinty is saddened to hear of the passing of Aretha Franklin, the Queen of Soul, who died of a pancreatic neuroendocrine tumor (pNET) this morning. She was a legend in the music industry and it is difficult to find the appropriate words to express our sadness of this loss.
For more information on Adenocarcinoma Cancer vs Neuroendocrine Pancreatic Cancer please visit the Neuroendocrine Tumor Research Foundation.
Videos from the 2018 Bay Area NET Patient Conference
Videos from the 2018 Bay Area NET Patient Conference - View them all here.
Keynote: Dr. Steve Pantilat
Lutathera Approved by FDA for Treatment of GEP NETS
1/26/18 - Advanced Accelerator Applications (AAA) Receives FDA Approval of Lutetium (177Lu) Oxodotreotide (Lutathera®) for Gastroenteropancreatic Neuroendocrine
AAA announced that the Federal Drug Administration (FDA) has approved the new drug application (NDA) for LUTATHERA® (lutetium Lu 177 dotatate*) for the treatment of somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors in adults. Click here to read the company press release or here to read the full prescribing information.
NorCal CarciNET President, Josh Mailman discusses this with Drs. Hope, Kunz, Strossberg and Liu on Facebook. Click here to view
Dr. Abrams speak on Integrative Oncology
On July 18, 2018, Dr. Donald Abrams spoke to NorCal CarciNET Community on "Understanding Complementary Approaches to Cancer Care"
2018 Bay Area Neuroendocrine Patient Conference - Hosted by UCSF
2018 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 21, 2018 - 8:30 am to 5:00 pm
Mission Bay Conference Center - 1675 Owens Street, San Francisco, CA
The day will feature nationally-renowned UCSF and Stanford NET experts, along with other internationally-known physician specialists who will offer sessions on immunotherapy, tumor bio-markers, PRRT, current clinical trials and strategies for living well after diagnosis. A pre-conference “primer” is offered for those newly diagnosed or in need a refresher on the basics of NETs. We will also have breakout sessions for disease types as well as some specifically for caregivers.
New this year - Breakouts on GI, Pancreatic, Lung, Poorly Differentiated NETS and Para/Pheo. All day Caregiver track.
Open to patients, caregivers and those interested in NETs.
Thanks to generous support from NorCal CarciNET Community, NETRF and Industry Partners there is no registration fee. Conference registration includes lunch and parking.Registration ended on January 14, 2018.
We will have limited room for those who are coming day of the event.
Or catch the webcast on Facbook Live starting at 8:30a Pacific Time
Videos from the NET Session at the SNMMI Patient Education Day
In June 2017, the Society of Nuclear Medicine and Molecular Imaging held its annual Patient Education Day at their Annual meeting in Denver. The event featured three thoughtful presentation from NET clinicians about the state of NET Management and Nuclear Imaging. NorCal CarciNET Community President, Josh Mailman was also featured on SNMMI TV
Dr. Hope on Nuclear Medicine for NETs Patients
FDA approves Xermelo for carcinoid syndrome diarrhea
The U.S. Food and Drug Administration today approved Xermelo (telotristat ethyl) tablets in combination with somatostatin analog (SSA) therapy for the treatment of adults with carcinoid syndrome diarrhea that SSA therapy alone has inadequately controlled.
“Today’s approval will provide patients whose carcinoid syndrome diarrhea is not adequately controlled with another treatment option,” said Julie Beitz, M.D., director of the Office of Drug Evaluation III in the FDA’s Center for Drug Evaluation and Research.
This new treatment is now available by prescription and will be in select specialty pharmacies beginning March 6, 2017.
To read more about the approval click here for the FDA's release or here for the Lexicon press release.
For those needing information on how to getting Xermelo please click here.
NETSPOT (Ga68 DotaTate) for NET Imaging approved by FDA
On June 1, 2016, the U.S. Food and Drug Administration (FDA) granted approval to NETSPOT form Advanced Accelerator Applications (AAA), the first kit for the preparation of Gallium-68 dotatate positron emission tomography (68Ga-dotatate PET) imaging. Gallium-68 dotatate is a positron-emitting analogue of somatostatin, and the radioactive probe helps locate tumors in patients with somatostatin receptor-positive neuroendocrine tumors.
“Use of advanced imaging techniques to detect rare neuroendocrine tumors at an early stage in patients is critical,” said Libero Marzella, director of the FDA Division of Medical Imaging Products.
Three studies have established the safety and efficacy of Netspot by comparing 68GA-dotatate PET imaging to standard imaging options as well as clinical and histopathological data in patients with neuroendocrine tumors.
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