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.
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
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.
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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AAA Opens Lutathera Expanded Access Program In U.S. to Eligible Patients And Announces Forthcoming NDA Filing to FDA and EMA.
AAA today announced that the company has initiated an expanded access program (EAP) in the United States for the investigational product, Lutathera. Through the program, Lutathera is being made available for patients suffering from inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analogue therapy. Healthcare professionals and patients can learn more about the Lutathera EAP by visiting www.clinicaltrials.gov (trial number: NCT02705313). To read more visit AAA's website.
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
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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This article was provided by one of our founding board members Julie Portelli. To contact Julie This email address is being protected from spambots. You need JavaScript enabled to view it..
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.
Many members of the NorCal CarciNET Support Group donate their time and energy to produce informational material for patient and caregivers living with Neuroendocrine Tumors.
