This is an archive of our monthly Newsletter. We encourge you to sign up to our mailing list so we can keep you up to date on the latest in our community.

In the third quarter of 2013 we changed how we mailed our newsletter - Issues prior to this switch can be found here.


2015 was an eventful year for the NorCal CarciNet Community and the NET Community as a whole.  

In just the last few months exciting developments have taken place that will impact our community as we go forward in 2016.

  • Three Phase III NET trials reported positive results - We will feature presentations on all three at the 2016 Bay Area Neuroendocrine Patient Conference on January 24, 2016. Click here for more information and to register (there is no charge). 
  • University of Iowa received a $10 million grant to study NETs from the National Cancer Institute.
  • Ga68 imaging for NETs is closer to approval, as the first New Drug Application was submitted.
  • NorCal CarciNET's President was honored as the 2015 Warner Advocacy Award Recipient.

NorCal CarciNET Community is a 501(c)(3) whose board members volunteer their time and energy so that all donations can be put to use to support our Community's Mission 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."

NCCN at Oakland Running Festival

We wanted to take the time and thank the 65 members of our community who have donated nearly $13,000 to help make the following possible in 2015:

  6,000 Presentations that have been downloaded from our website
  5,000 Videos that have been watched from 67 countries
  4,000 Unique visitors to from around the world
     200 Attendees to the 2015 Bay Area NETs Conference 
     100 Attendees to our PRRT webinar co-hosted by the Society of Nuclear Medicine and Molecular Imaging (SNMMI)
       65 Patient attendees to the 3rd Theranostic World Congress (Thanks to grants from NET RF and Carcinoid Foundation) 
       50 Runners at the Oakland Running Festival raising awareness - come join us in 2016 as we push for 100 runners
       45 Community Members on average that attend our bi-monthly meetings
       15 Speaking events, conferences and meetings attended by our board representing NorCal CarciNET Community
         6 Facilitated Community Meetings
         3 Distinguished service awards presented to our president for his work with the 3rd Theranostic World Congress, ICRT 2015 and the SNMMI
         3 Travel grants awarded to medical professionals to attend NANETS and other professional conferences 
         2 Facilitators at all of our Community Meetings (for patients and caregivers) 
         1 Warner Advocacy Award Recipient for excellence in NET Patient Advocacy - which could not be achieved without Community support

Earlier today, NorCal CarciNET's Josh Mailman was named the 2015 Warner Advocacy Award recipient for Excellence in NET Patient Advocacy. Josh will be presented with the award on January 24th at the 2016 Bay Area Neuroendocrine Tumor Patient Conference in San Francisco (see below). To read more about the award please click here

Now On-Line:

On June 30th, Dr. Edda Gomez-Panzani, a dear friend of NorCal CarciNET passed away from cancer. Edda gave several talks to our group over the years and was very supportive not only to our support community but to many support groups across the world. Edda was instrumental in the recent FDA approval for lanreotide late last year. To celebrate her life, we have put up a remembrance page on our web site. Please feel free to add your thoughts to the page.

We look forward to welcoming Dr. Thomas Hope from UCSF. Dr. Hope’s main research focus is on novel imaging agents. He is the lead investigator on the Ga-68 DOTA-TOC IND at UCSF.

We look forward to seeing you at our October 3rd meeting. Our meetings are held from 1-4pm at the Cancer Support Community (CSC), located at 3276 Mc Nutt Avenue, Walnut Creek, CA. For more information visit our meeting page online

Now On-Line:

PRRT Insurance Coverage: Update on how Community member Myna was able to have her treatment covered by insurance.

Video from our last meeting on Carcinoid Heart Disease by Dr. Jerome Zacks of Mount Sinai.  The session provided an excellent overall understanding of NETs as well as detailed information regarding Carcinoid Heart Disease.