April 2017 Updates

Community Meeting on Wednesday May 3, 2017 at UCSF Mission Bay - Noon

Dr. Tom Hope MD, from UCSF's Nuclear Medicine Department will speak to the NorCal CarciNET Community on imaging and Peptide Radio Receptor Therapy (PRRT). Dr. Hope was the recipient of a 2016 NorCal CarciNET Community travel grant to attend the NANETS symposium in Jackson Hole.

A patient and family discussion, facilitated by Maryellen Collamore, ASW, will follow. Light lunch provided.
Click here to register. Open only to Patients and their families / caregivers.
Our UCSF Meetings are held at UCSF Mission Hall 550 16th Street, San Francisco, CA 94158.
Room 1407 (Note change in room for this meeting) (Entrance on 4th St.)

Video from our previous meeting: April 1, 2017 - Dr. Padda spoke to NorCal CariNET Community on Lung NETs.

NET News:

Neuroendocrine Tumor Research Foundation (NETRF) Awards $4 Million of Grants to Better Understand NETS:
(NETRF) today announced its largest research commitment ever—$4 million in collaborative grants—most from its new Accelerator Grants program to study neuroendocrine tumors (NETs), a widely misunderstood, commonly misdiagnosed cancer type, without adequately identified genomic drivers.

Accelerator Grants recognize innovative and transformative research of NET drivers, capable of expanding our understanding of the disease and informing personalized treatment options. They are funded as part of a $15 million gift to NETRF by the Margie and Robert E. Petersen Foundation. To read more and/or to view presentations from the grant presentations, click here.

JAMA Oncology published "Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States" updating incidence and prevalence from 2008 study. The article shows an increase in both incidence and prevalence of NETS due to increased diagnosis of early-stage tumors. Survival of patients with distant-stage tumors has improved, reflecting improvements in therapies. According to the study as of 2012 there are ~171,000 people living with NETS in the US with ~23,000 new cases per year. Click here to view the article on line or click here to download the article.

Pancreas published "Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors: Results From a Large Patient Survey in the United States" The survey showed that approximately 50% of US patients reported being diagnosed with other conditions before receiving their NET diagnosis, which for 34% took 5 years or more. Patients experienced many symptoms on a daily basis as a result of NETs, which had a substantial negative impact on their work and daily lives. Numerous improvements were suggested by patients, including better access to NET-specific treatments and medical teams/centers and better education for the management of disease-related and treatment-related symptoms. To read the entire article click here.

The U.S. Nuclear Regulatory Commission (NRC) is requesting comments from the general public on its patient release programs. Specifically, the NRC would like input from the public on whether additional or alternate criteria are needed and whether to clarify the NRC's current patient release requirements. The information will be used to determine whether significant regulatory changes to the NRC's patient release requirements are warranted.

NRC is seeking feedback in the six areas listed below by June 12:

Development of an Activity-Based Patient Release Threshold
Clarification of the Time Covered by the Current Dose Limit in 10 CFR 35.75(a) for Releasing Individuals
Appropriateness of Applying the Same Limit on Dose From Patient Exposure to All Members of the General Public
Requirements for Releasing Individuals Who Are Likely To Expose Young Children and Pregnant Women
Requirement for Timely Discussion With the Patient About Patient Isolation to Provide Time for Licensee and Patient Planning
Requirement To Ensure Patients Are Given Instructions Prior to the Procedure

NorCal CarciNET Community is working with the Society of Nuclear Medicine and Molecular Imaging (SNMMI) to submit comments to NRC prior to the June 12 deadline. We will publish our response via this newsletter and on our website during the month of May so others in the NET community can have a response framework if they choose to respond as well.

Events:

May 5: 6th Annual Focus on Neuroendocrine Tumors Conference (Philadelphia) hosted by Penn Medicine and Neuroendocrine Tumor Research Foundation

May 6: 2017 Seattle Neuroendocrine Cancer Patient Conference hosted by The Neuroendocrine Cancer Awareness Network

May 13: Wellness House Chicago hosting a live stream webinar with Xavier Keutgen, MD Surgical Oncology, Assistant Professor of Surgery, Director, Rush Neuroendocrine Tumor Program. Click here to learn more.

May 17: Josh Mailman speaks to Utah support group meeting (6-8pm) Intermountain Medical Center (IMC), Doty Family Education Building (Bldg. #6)

May 18: New Approach in the DX and Mgt of NETS (Salt Lake City) hosted by SNMMI. CME advanced registration required.

May 22: Josh Mailman will be giving the annual Sandler Lecture in Nuclear Medicine and Molecular Imaging at Vanderbilt University.

June 11: NorCal CarciNET Community and SNMMI host a Patient Education Day at the Society's Annual Meeting in Denver. To learn more about this day long event click here.

June 24: LACNETS and Neuroendocrine Tumor Research Foundation host a Patient Education Day in Los Angeles.

Oakland Running Festival - April 2, 2017

Every day another person in the Bay Area gets diagnosed with a NET. Thanks to education and awareness along with improved treatments those with NETs have greater quality and quantity of life (there are over 3,000 of us in the Bay Area).

We had over 100 participants join us for an amazing day at Lake Merritt. Click here to see over 200 pictures from the day. Some of our runners have set up contribution pages to support NorCal CarciNET and have raised over $8,500 so far: Todd Lyodd, Jennifer Magee, NorCal CarciNET Board, LexCares.

Running