Exploring new ground with a clinical trial of a NET cancer vaccine

A brain cancer vaccine shows potential for NETs

It all started at a lab bench. The researchers who developed a cancer vaccine called SurVaxM™  for brain tumors at Roswell Park Comprehensive Cancer Center, Buffalo, NY, in search of additional indications that could potentially benefit from this cancer vaccine, stained a couple of neuroendocrine tumor (NET) specimens for a molecule called survivin. Because the specimens tested unusually high for this target, Robert Fenstermarker, MD, and Michael Ciesielski, PhD, contacted Roswell Park GI Oncology Section Chief Renuka Iyer, MD, to ask, “Do you have a lot of these patients? We should probably be looking at this. It might help.”

Further testing of laboratory specimens showed one in two NETs to be positive for survivin, which convinced Dr. Iyer to study SurVaxM as a cancer vaccine in NETs.

Cancer vaccine SurVaxM, awarded orphan drug status in 2017 by FDA, is a synthetic peptide that stimulates the immune system to target tumor cells (which express survivin) for destruction. Dr. Iyer compiled findings from laboratory and clinical testing in brain cancer to request funding from NETRF for a phase I clinical trial in NETs. (The data generated from SurVaxM brain cancer research accelerated the pace for testing in NETs, trimming years from the average research timeline.) NETRF funded the project in early 2019.

“We actually did not have the money to do it on our own,” said Dr. Iyer. “NETRF expedited our ability to do this study and rapidly move toward enrollment.” With a plan to treat a small cohort of ten patients, Dr. Iyer opened the clinical trial in spring of 2019. Three patients have been treated, but only one completed the first course of study medication. (Learn about his experience below.) Several other patients are being evaluated for participation. 

Watch the video to learn how NETRF funds promising, breakthrough research, like this cancer vaccine, to improve the treatment of NETs. 

Study participant shares what it’s like to take SurVaxM

Justin, a twenty-something outdoor adventurer from New York, is the first patient to complete the first course of the SurVaxM cancer vaccine for NETs in Dr. Iyer’s clinical trial. Upon returning from a summer cross-country rock climbing trip, he learned about the clinical trial from Dr. Iyer. “I thought it would be a good idea,” said Justin.

He started an eight-week initial course of treatment with SurVaxM  in October 2019 during which he received the  cancer vaccine every other week. Compared to somatostatin analog injections, Justin found SurVaxM injections in the arm easy to take. “It was not bad at all, not painful,” he said.

After starting the cancer vaccine, Justin said it felt like “he had a cold all the time.” He experienced mild side effects like a runny nose and body aches during the first few weeks.

When he feels low, he climbs high

Justin coped with his symptoms in the outdoors. “Even when I am feeling down, I push myself,” he said. “Climbing is like my therapy. It takes me away from the stuff that is going on with my health. It makes me realize I can still do things even though I feel a little sick.”

Justin pushed past his low-grade symptoms, even competed in a rock-climbing competition. For him, rock climbing is mentally and physically transforming.

Along the way, he had some doubts. “I wasn’t feeling better. I felt crappy,” said Justin. “I thought ‘Oh man this isn’t working; my cancer is getting worse.’” Exhausted and exhilarated atop mountains with 100-mile views rolled out before him, Justin found optimism. “My body is going through so much right now,” realized Justin. “I am just going to let my body do its thing and take care of myself.”

Justin's Travel Journal

During his cross-country, mountaineering trip, Justin wrote about his experience with neuroendocrine cancer — what he’s learned about himself, others, and life in general.

This year has been crazy, and the past months have been an adventure of a lifetime.
Our time on earth is short and I believe we truly don’t know how precious our time is.
We think we have all the time in the world, but we don’t. Years can fly by like a blur with how busy we are and can take us away from what matters most to us.
We can get caught up in the rat race of life with careers, relationships, and just trying to be an “adult” and live a life we’re expected to live.
Or, we can pursue the things that mean the most to us, which can take a lot of sacrifice but be very rewarding.
I’ve met all sorts of people on my travels— some in situations that would bring others to a halt— but these people seem to have a drive to live life and squeeze every last drop out of the lemon they’ve been given.
These are the people that I believe have figured out their true pursuit of happiness, which is something truly incredible and I hope that you can find the same in your lives. Keep living my friends.
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How he started this uphill journey

Two and a half years ago, Justin started experiencing what seemed like panic attacks, during which he felt nervous and excited, with a racing heart and flushed face. With multiple episodes of a red, swollen face in an average workday, Justin lived in fear of an eruption while talking to managers or customers.

Justin’s doctor was stumped. After two months of testing, a 5-HIAA test result supported a carcinoid syndrome diagnosis. A scan found liver lesions, identified as neuroendocrine tumors from a biopsy, but the primary tumor site was never identified.

Multiple interventional radiology treatments have helped treat the metastasis. Somatostatin analog injections have helped reduce the severity of carcinoid syndrome symptoms like heart palpitations. Flushing, however, continues to be a problem for Justin. He has identified his primary triggers. To improve his ability to manage flushing, this fearless explorer puts himself in trigger situations to train himself to manage it.

Feeling encouraged about the future

Justin finished the initial course of SurVaxM in mid-December. Dr. Iyer ordered a scan to assess whether Justin’s lesions had progressed or stabilized. Disease progression would indicate poor response, requiring that Justin stop treatment with SurVaxM to pursue other options. Justin opted to learn of the test results after Christmas.

The testing showed slower tumor growth (when compared to the prior period), which was categorized as “stable,” allowing Justin to remain in the SurVaxM trial.

He begins his next round of treatment in March 2020. Dr. Iyer said she is pleased with Justin’s response to treatment and the low grade-level of his side effects. “SurVaxM has expanded his treatment options, which means we can save the more toxic things for later, “she said.

Justin is encouraged by the response, “though this didn’t cure me it’s a step in the right direction for me and for those in the future who try this trial,” he said. “I plan on continuing to work with my body and focus on my physical and mental health to hopefully better my results and keep myself healthy.”

“I would close with just one word to patients,” said Dr. Iyer. “That there is a reason to be hopeful. Today, more so than years past, doctors, scientists, foundations, and pharma are doubling and tripling efforts to discover more options for NETs. This collaboration is going to get us further, so stay hopeful.”

Learn more about the trial

See more information or ask about eligibility criteria by calling 1-800-ROSWELL (1-800-767-9355.).  


NETRF funds laboratory research to understand the development of neuroendocrine tumors and translational research to explore new concepts in treatment. Research grant descriptions and research updates from NETRF are not intended to serve as medical advice. It can take years for research discoveries to be fully validated and approved for patient care. Always consult your health care providers about your treatment options.