NET Clinical Trial Finder Tool
Reading between the stripes - launch of a new tool makes clinical trials accessible for every NETs patient
The first neuroendocrine tumor clinical trial finder for patients and physicians has been launched by Ancora.ai and NorCal CarciNET. The free online tool offers personalized, unbiased trial results and can be accessed at https://www.ancora.ai/neuroendocrine. It is also available at NorCal CarciNET', INCA Alliance and NETRF's websites.
Clinical trials are often the best (sometimes only) treatment option for neuroendocrine tumors (NETs) due to rapidly evolving research in the space and a dearth of good standard of care treatment options. However, identifying the right clinical trial is a tedious task even for specialist physicians, and a nearly impossible one for patients.
2. About the tool:
Tell us your story
NorCal CarciNET Community has participated in the Oakland Marathon (Oakland Running Festival) for over a decade. In that time we have had over 250 runners, walkers, and everything in between raise awareness and over $100,000 for our NET Community.
We continue to be a leading non-profit at this event. Tell us your story, so we can share it with the festival organizer. Why do you participate or donate to this event? Who do you do it for or in honor of?
You don't need to have an account - just use your name and email.
NorCal CarciNET Community Objects to Humana’s Decision to Deny Coverage for PET/CT & SPECT/CT
NorCal CarciNET Community joins others in the medical community objecting to Humana's decision to deny coverage for most PET and SPECT procedures starting on February 4, 2021. The NET community relies on PET imaging to better understand our disease and to establish if we are candidates for PRRT therapy.
We hope others will join us and let Humana know that this policy is endangering the health of those with NETs and diseases.
To download our letter to Humana, please click here.
Eating in the time of the COVID Pandemic - Q&A with Rebecca Katz
We are beyond grateful that Rebbeca Katz, author of the "Cancer Fighting Kitchen" and Jen Yasis, Founder of the Healing Kitchens, took time to answer questions that our neuroendocrine tumor community had on eating while we are all staying home and limiting our exposure during this pandemic.
This information does not constitute professional medical advice. For questions regarding your own health, always consult a physician.
Search the Recipe Box at RebeccaKatz.com more herby drizzles, dollops, other blended soups, and recipes.
Remember to omit minor ingredients that are not recommended for a NET or CS diet or that you know are not well tolerated.
Vinegar was mentioned in the video to clean fruits and vegetables - this is for other bacteria (NPR: What does it take to clean fresh food)
COVID-19 and NETS
We are grateful to Dr. Pamela Kunz, MD (Oncology) and Dr. Janice (Wes) Brown, MD (Infectious Disease)
of Stanford University for their assistance in answering these questions.
As information is changing rapidly - Please consult with your medical team and the resources listed below for any updates or changes.
We welcome you to join our mailing list to be updated.
If you experience symptoms of fever, cough, or breathing problems, please call your medical provider immediately to be evaluated for COVID-19.
Interview with Dr. Pamela Kunz on 2020 Bay Area Conference Cancellation and COVID-19
2020 Bay Area Neuroendocrine Patient Conference - Hosted by Stanford Medicine
THIS EVENT HAS BEEN Cancelled due to COVID-19
2020 Bay Area Neuroendocrine Tumor Patient Conference
Hosted by: Stanford University Medical Center and NorCal CarciNET Community
In cooperation with UCSF
Sunday, March 8, 2020 - 8:30 am to 4:30 pm The Frances C. Arrillaga Alumni Center, 326 Galvez St, Stanford, CA 94305
The day will feature nationally-renowned Stanford and UCSF NET experts, along with other internationally-known physician specialists who will offer sessions on a wide variety of topics pertaining to Neuroendocrine Tumors (NETS) including surgery, liver-directed therapy, imaging, PRRT, current clinical trials and strategies for living well after diagnosis. A pre-conference “primer” is offered for those newly diagnosed or in need of a refresher on the basics of NETs. We will also have breakout sessions by disease types.
We are honored this year to have as our keynote speaker Rebecca Katz, chef and author of numerous cookbooks, including "The Cancer Fighting Kitchen."
Watch a live cooking demonstration with Ms. Katz where she'll teach you recipes and cooking strategies for maximizing the cancer fighting potential of food while minimizing cancer treatment-related side effects.
Open to patients, caregivers and those interested in NETs.
Thanks to generous support from Stanford Medicine, NorCal CarciNET Community, and our Partners there is no registration fee. Conference registration includes lunch and parking.
Click on Read more info for speakers and agenda.
MEDICARE / CMS and Reimbursement for Advanced Radiopharmaceuticals
On October 18, 2019, an opinion piece that NorCal CarciNET Community’s Josh Mailman opinion article (“CMS policy shouldn't penalize those with rare disease”) was published by The Hill, The opinion piece highlighted the challenges with the current method that Medicare/CMS use to pay for radiopharmaceuticals. This webpage provides more information on how this will impact NET patients and providers along with a tool for those that are interested in taking action.
The Medicare Diagnostic Radiopharmaceutical Payment Equity Act of 2019 (H.R. 3772), which many in the nuclear medicine community are working on to help improve, will impact Medicare payments for imaging only. This bill is not looking at broader medical payment, billing or cost issues.
In 2008, Medicare/CMS simplified how CMS paid for PET Imaging. The simplification reduced an infinite combination of supplies and tracers to a few PET bundles based on tracer cost. These bundles allowed a provider to bill for all PET imaging in a simplified manner. The most expensive bundle is ~ $1,400 (there are some regional adjustments).
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.
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
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.