Neuroendocrine Tumor | City of Hope

Patient finds solution to rare, puzzling condition

When it comes to getting the right care after a scary diagnosis, Eric Melgosa has a simple rule:
 
“Find someone on your side,” he urged.
 
Melgosa, a 31-year-old university marketing pro from Riverside, California, learned the importance of such an advocate when he faced an obscure but persistent disease.
 
Back in 2016, after suffering for years from a variety of digestive issues, Melgosa was diagnosed with neuroendocrine tumors (NETs). He also discovered that many doctors knew comparatively little about the condition.
 
That’s not a great surprise. NETs are rare, with only about 12,000 people in the U.S. diagnosed each year.
 
Neuroendocrine cells have traits of both hormone-producing endocrine cells and nerve cells, and they help connect those two systems, enabling key functions like digestion to take place.
 
Daneng Li Bio
Daneng Li, M.D.
“When you eat,” explained Daneng Li, M.D., co-director of City of Hope’s Neuroendocrine Tumor Program, citing one example, “your nervous system tells your GI tract to release hormones” initiating the digestive process.
 
When neuroendocrine cells grow abnormally — usually because of a genetic mutation — the resulting tumors can pose an additional challenge. Up to 20% of NETs are “functional,” meaning they release hormones in unhealthy quantities. In advanced cases, this can trigger a collection of symptoms called “carcinoid syndrome” that may include skin flushing, facial skin lesions, diarrhea, difficulty breathing and rapid heartbeat.
 
About 40% of all NETs turn up in the GI tract, especially the small and large intestines. They can also be found in the lungs and pancreas. Most NETs grow very slowly — the five-year survival rate is better than 90% — and most patients tend to be older, often over 65.

Diagnosed at Just 26

Most, but not all. Melgosa was only 26 when he was diagnosed. “I’d never heard of neuroendocrine tumors,” he said. “It threw me for a loop.”
 
He had surgery to remove some of the tumors, but didn’t like what he was being told about his next steps.
 
Unhappy with the limited knowledge (“They seemed a few years behind,” he recalled) and slow pace (“They were talking ‘many months,’ but I wanted a better, quicker plan”) of his original doctors, Melgosa reached out to City of Hope.
 
He met Li and surgeon Gagandeep Singh, M.D., two days later, surprised at how quickly he was able to see two “frontrunners” in the field. (He does admit that his first sight of the youthful Li took him aback. “I thought he was a resident!” he says, smiling.)
 
Though young in years, Li has amassed a formidable record in a very short time. He’s one of the country’s up-and-coming experts in geriatric oncology. He’s also an established authority on liver cancer.
 
At City of Hope since 2015, Li has helped build and grow the Neuroendocrine Tumor Program into one of the busiest and most robust in the U.S.
 
“We built it from the ground up by leaving no patient behind,” said Li. “When I started here, we’d get maybe 20 neuroendocrine patients a year. Now we see more than 150.”
 
His passion for this work began at home. Both parents are doctors; three grandparents succumbed to cancer. Early on, Li resolved to make a global impact, focusing on high-risk, high-reward research in areas where few others had gone.

Tackling Rare Diseases

“I’ve always been attracted to rare illnesses that don’t get much research attention and have limited treatment options,” he explained. “If I could make a breakthrough there, it would really change people’s lives.”
 
Li runs an ongoing series of clinical trials in search of the best treatment for NETs, which are difficult to eradicate (“Getting a complete remission is very hard with these solid tumors,” he said) but can be controlled over the long term.
 
“Our goal, always,” he insisted, “even for advanced cases, is to change things as much as possible, control the condition so the patient can live with it like a chronic disease … we can help them thrive with treatment, even for several decades.”
 
Unlike with other cancers, most first-line treatments for NETs don’t involve chemotherapy, unless the tumors are growing aggressively — and most aren’t.
 
Instead, Li takes a targeted approach, deploying drugs like lanreotide, which binds to receptors for the protein somatostatin, found on many NETs. These drugs will slow tumor growth and control hormone secretion.
 
A newer strategy called peptide receptor radionuclide therapy (PRRT) holds even greater promise. Approved by the Food and Drug Administration in 2018, PRRT drugs target those same receptors, but do so with “liquid radiation.” PRRTs have been shown to stop tumor growth for longer periods, and even shrink them in some cases.
 
Li sees tremendous potential in the PRRT model and wants to craft similar “radiation smart bombs” that will home in on other NET targets. “I want to use all our therapies as best we can, and get the maximum mileage out of each one,” he said.
 
And maximum mileage, he said, will be measured through his patients’ eyes.

'A Holistic Approach'

“When we design a treatment,” he explained, “we want to meet the patient’s needs. Not just for a longer life, but a better life. We take a holistic approach.” In fact, Li has received federal grant money to conduct studies to better understand the specific needs of NET patients.
 
Melgosa liked the sound of that.
 
“They [Li and Singh] were very calm, composed and totally up to speed,” he recalled. “They were willing to talk options with me. They asked me, ‘What are your concerns?’ and then we examined my plan together.
 
“And nobody rushed me.”
 
Ultimately, Singh performed additional surgery to remove more tumors in Melgosa’s liver and intestine. When subsequent scans revealed some lingering cancer cells, Li followed up with lanreotide (the “weed killer,” smiles Melgosa). At the time, PRRT had not yet been approved, but it’s now an option going forward. No rush.
 
“The ‘weed killer’ is working,” he said. “We keep monitoring. And Dr. Li keeps doing research into new options, with positive results. At my age it makes sense to take things slow, do as little as possible now, so we have the rest of the arsenal available later if we need it.”
 
Li has nothing but praise for that attitude.
 
“Eric is an amazing patient,” he said. “To be diagnosed at such a young age and to persevere ... is not an easy task. Eric is now giving an additional voice to [NETs] with his story ... I am so proud of all his efforts to raise awareness for this rare diagnosis.”