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.
NorCal CarciNET Community is once again working with the Society of Nuclear Medicine and Molecular Imaging (SNMMI) to host a free Patient Education Day during the Society's annual meeting in Denver on June 11th, 2017. This day long patient centered program is will cover the history and safety and future of nuclear medicine as well as understanding clinical trials as they pertain to your treatment. There will also be a NET breakout, that will focus exclusively on Neuroendocrine Tumors, imaging and treatment.
There is no charge for registration, which also includes access to all SNMMI sessions Saturday - Tuesday.
To view all NET related session click here and proceed to June's calendar.
Advocates rally to protect federal funding of cancer research
The White House released a 2018 budget outline on March 14, 2017 that cuts National Institutes of Health (NIH) spending by nearly 20 percent. NorCal CarciNET shares the concern expressed by other cancer-related organizations and our collaborators that a funding decrease of this magnitude could disrupt, even derail, America’s cancer investigators and research institutions. These cut will amount to nearly $100 million shortfall to UCSF and Stanford only according to the San Francico Chronicle. These cut include a nearly $1.2 billion dollar cut for the NIH in FY2017.
NIH funding critical
More than 80 percent of the $32 billion NIH budget is awarded to universities, medical schools and other research institutions through a competitive grant process. NIH grants often comprise a significant portion of an institution’s or individual investigator’s funding.
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.
External links to this news: (your browser will open a new window)
FDA Announcement
AAA Press Release
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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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)."
