Because of the increased incidence of neuroendocrine tumors, especially in Kentucky, doctors and researchers at Markey are determined to find new ways to care for patients with this uncommon type of cancer.
When Paul Roscoe went to his primary care physician for a checkup in the summer of 2016, he was in rough shape: The 6’2” former football player and fitness enthusiast had lost 40 pounds without trying in just a few months.
The culprit? Stage IV pancreatic neuroendocrine tumors, which had spread to his liver and other surrounding organs. The tumors were wreaking havoc on his hormones and gastrointestinal tract. After receiving this diagnosis from a local gastroenterologist, Roscoe was determined to educate himself on this disease that he’d never heard of.
“I just dove into my research and started looking up information on neuroendocrine cancers,” he said. “I mean, I couldn’t even spell it.”
Through his research, Roscoe learned that a nationally renowned doctor who specialized in these rare cancers was just down the street: UK Markey Cancer Center medical oncologist Dr. Lowell Anthony. In August 2016, he walked into his first appointment at Markey to consult with Anthony.
Although neuroendocrine tumors (NETs) occur in almost seven people out of 100,000, doctors have seen an almost seven-fold increase in incidence in the United States in the past few decades, according to an article published in JAMA Oncology. Even more alarming, according to data from the Kentucky Cancer Registry, the incidence in the Bluegrass State is closer to 10 per 100,000.
With this data front of mind, physicians at UK Markey Cancer Center have come together to increase the availability of NET treatment, further our understanding of this malignancy through research and provide personalized support for patients like Roscoe.
"I just put everything I had in Dr. Anthony's hands and let him work his magic."
“Kentucky has a substantial NETs patient population, compared with the country as a whole,” said Dr. Charles Kunos, medical director of Markey’s Clinical Research Office. “Because of these high numbers, Kentucky serves as an NETs referral center for a large section of the country. And we’re able to offer patients the highest-quality care from some of the most experienced physicians, like Dr. Anthony.”
“I wasn’t in very good shape when I walked in to see Dr. Anthony,” Roscoe said.
Not all neuroendocrine tumors can be treated the same way – different hormones, which cause different problems and side effects, can be sent into overdrive depending on the type of tumor involved. Roscoe’s diagnosis of pancreatic neuroendocrine cancer puts him in some famous company – it’s the same disease that took the lives of both Steve Jobs and Aretha Franklin.
Luckily for Roscoe, his tumors had developed in the “tail” of the pancreas, which meant the disease was more surgically accessible than tumors that develop in the pancreas head.
After Roscoe’s first round of chemotherapy, Anthony performed multiple tests until he could narrow Roscoe’s diagnosis further: a malignant VIPoma, a type of pancreatic neuroendocrine tumor that forms from the cells that produce vasoactive intestinal peptides (VIP). This specific cancer occurs in just one of every 10 million people.
Rather than going after the primary pancreatic tumor, Anthony tried a different approach: tackling the liver tumor first. He switched Roscoe over to different chemotherapies to help treat metastasis of the disease.
The chemo helped, but Roscoe was experiencing extreme fatigue and was taken off one of the medications. During the next year, he underwent two liver embolizations, a procedure that blocks blood flow to the liver tumors and helps kill cancer cells.
The liver embolizations were rough on Roscoe – he was in a lot of pain and was readmitted to the hospital twice. But the treatment was effective, and in April 2019, he was finally able to undergo surgery. Markey surgical oncologist Dr. Michael Cavnar biopsied Roscoe’s liver and removed the tail of his pancreas – resecting all the primary tumor – and also removed his gallbladder, appendix, spleen and 16 lymph nodes.
“It’s like being the closing pitcher in a baseball game,” Cavnar said. “Dr. Anthony got him into a great position for me to go in and get Mr. Roscoe’s primary tumor out.”
With Roscoe’s pancreatic tumor gone, the focus is back to the remaining disease in the liver. Roscoe’s tumors have unfortunately continued to progress, so the next step of his treatment will involve Lutathera.
This radioactive treatment is specifically for neuroendocrine tumors occurring in the pancreas or gastrointestinal tract. It’s given to patients like Roscoe, who continue to experience tumor growth after receiving multiple other therapies.
Though the drug wasn’t approved by the Food and Drug Administration until 2018, Anthony has been involved in research on it for more than two decades. Markey was the first medical center in Kentucky to offer it, and so far Anthony has treated more than 100 patients with the drug.
“With the Lutathera, we’re anticipating more improvement in his symptoms,” Anthony said. “It will hopefully reduce the amount of disease he has, help control his gastrointestinal issues and give him more energy.”
Anthony has touched the lives of many patients with NETs, including Amanda Lockey and her husband, who were so inspired by Anthony that they funded a NETs clinical trial at Markey as a way to give through the Markey Cancer Foundation.
With only a handful of agents approved for the treatment of NETs, the majority of which are limited to gastroenteropancreatic NETs, clinical trials are an important therapy option for this patient population.
Markey holds the distinction of opening the first radiopharmaceutical clinical trial for the treatment of NETs within the National Cancer Institute’s Experimental Therapeutics Clinical Trials Network (ETCTN). The ETCTN employs a collaborative, team-based approach to early-phase clinical trials of NCI Investigational New Drug agents in high-priority areas of unmet cancer treatment needs. With 40 high-profile cancer centers across the United States, the network funds trials led by clinician-scientists at participating sites, and the trials are then conducted by the network sites.
This specific trial, ETCTN 10450, is overseen by medical oncologist Dr. Aman Chauhan and is examining the combination of Lutathera and the novel DNA-PK inhibitor peposertib for the treatment of NETs.
"It's a big win for our patients regionally because they don't have to travel very far to participate in these cutting-edge trials."
Dr. Aman Chauhan
“Lutathera works so well in treating this patient population, but it’s not curative,” Chauhan said. “It’s a big advance for the field, but we shouldn’t stop there. We need to continue to improve our treatment options.”
Chauhan is also running another ETCTN trial, 10388, which is investigating the side effects and best dose of triapine – a ribonucleotide reductase inhibitor – plus Lutathera for the treatment of NETs. Both trials are ongoing, and he expects data to be presented in the next two years.
“There’s a lot of excitement about the potential of these therapies in the NET community,” Chauhan said. “And it’s a big win for our patients regionally because they don’t have to travel very far to participate in these cutting-edge trials.”
With all of the demonstrated efficacy and further promise of radiopharmaceutical agents in the treatment of NETs, Kunos, Anthony and Chauhan are working to pass along their expertise to other oncologists across the country. They were recently awarded a grant to create a Radiopharmaceutical Alliance with other U.S. colleges and universities to mentor five early-career investigators on the use of radiopharmaceuticals for the treatment of cancer, including NETs.
“Our mission is to accelerate the world’s transition to sustainable radiopharmaceutical therapy through education and mentored research,” Kunos said.
Roscoe has been dealing with his disease for nearly four years, and he’ll continue to fight it for the rest of his life. Because of the extent of liver metastasis, a complete cure is not an option. The goal is to keep him as healthy and active as possible so he can have the best quality of life.
And while Roscoe says he could have gone anywhere in the country for treatment, he felt that Markey was the place for him.
“We’ve moved seven times, and I got to thinking, ‘I’m just so happy with the care I’ve had at Markey,’” he said. “So I just put everything I had in Dr. Anthony’s hands and let him work his magic.”