The magazine Scientific American recently took a closer at the impact the pandemic is having on cancer patients and detailed how missed treatments and screenings could result in more severe diagnoses down the line. The article features NETRF Board Member and NorCal CarciNET Group Leader Josh Mailman. Mailman describes how his tumors doubled in size while his scans were postponed three times. (MORE)

It’s estimated that by the time 40 to 60% of NET patients present with symptoms, they already have a metastatic tumor. The most common site of metastasis is in the liver.

In this video from NETRF’s Know Your NETs patient conference, Dr. Xavier Keutgen of the University of Chicago weighs the pros and cons of surgical debulking of the liver. 

If you are a LungNET patient who is having surgery, your excess tumor tissue is needed so scientists can grow cell lines for research. NETRF, pattern.org, and the Broad Institute continue to collaborate on a project to create cell lines from tumor samples. These cell lines are critical to cancer research and can be used to analyze the genetic composition of tumors and test the effects of drugs.

If you are having surgery for a LungNET, your excess fresh tumor tissue can be donated to this project.  There is no cost to you or your hospital. Tissue donation does not affect your clinical care or preclude donating tissue to research at your hospital. The more samples collected, the greater the chance for success and creation of diverse NET cell lines. (MORE) 

This project has already been successful with other NETs.  A new NET cell line from an intestinal NET sample donated through this program has been created at the Broad Institute.  Other NET samples are growing in a “cell nursery.”

Dr. Satya Das of Vanderbilt University Medical Center received a NETRF Investigator Award in 2019 to study the effectiveness of a drug combination in shrinking small intestinal and pancreatic neuroendocrine tumors.  NETRF funded Dr. Das' research to study whether cabozantinib, a promising anti-blood vessel growth drug that has been shown in clinical trials to block tumor growth processes in 15% of NET patients, could be more effective if used in combination with a new drug called CB-839. Current treatments for patients with GI NETs often leave residual disease that requires more potent treatments. “The NETRF Investigator award has enabled me to move forward a concept with a new energy-depleting drug (CB-839) in combination with cabozantinib, all the way from an idea to a full clinical trial protocol," says Dr. Das. Read more about this Phase II clinical trial. (MORE)

Tax season is underway. The tax filing deadline of Thursday, April 15 is just 49 days away and this year the IRS has said it will not extend the deadline in 2021. At NETRF, we are incredibly grateful for the support of our generous donors. Should you need a copy of your official NETRF acknowledgment of your 2020 gift, please email  Susan Payson or Eva May. Our development team would be happy to help you.