Jud Kimmel knew his body well enough to recognize something wasn't right. For over a year, the 51-year-old father of three had been experiencing a bewildering combination of symptoms: periodic diarrhea, facial flushing that came and went unpredictably, and episodes of shortness of breath.
"I was having these very strange and inconsistent symptoms," Jud said. "Doctors thought I had different GI tract problems, or a food allergy, or was having anxiety attacks because of the shortness of breath and facial flushing."
His doctors faced a notoriously difficult diagnosis to pin down. Neuroendocrine tumors (NETs) are known in the medical community for mimicking other conditions, often leading patients through months or years of testing before the true cause is discovered.
"Actually, getting diagnosed after about a year of those symptoms is relatively quick in the NET world," Jud said. "A lot of people go 3 to 5 years before they get a correct diagnosis."
It was his primary care physician who finally connected the dots, ordering specialized tests that pointed toward NET. Further testing confirmed what no one wanted to hear: tumors had already spread throughout his liver and into the tissue surrounding his intestines.
Specifically, the tumors were Stage IV, Grade 3 small bowel neuroendocrine tumors—meaning the cancer had reached its most advanced stage, had spread far from where it started, and the cells were multiplying rapidly.
"I didn't feel like I was having symptoms that would rise to the level of what I would think of as stage 4 cancer," Jud said. "So it was quite a shock."
The diagnosis hit the family hard. Jud and his wife had three children—all either in college or high school—who would need to navigate this alongside them. Tumors were growing rapidly throughout his liver, the largest the size of a softball. Traditional surgery was too risky given how extensively the cancer had spread.
Recognizing the complexity of NET cancer, Jud’s oncologist immediately referred him to Mayo Clinic's specialized team. There, Jud learned about something that would change everything: a NETTER-2 clinical trial.
The trial would test a shift in treatment strategy. Instead of saving lutetium-177 DOTATATE as a last resort, NETTER-2 explored using it immediately for patients with aggressive tumors like Jud's.
The treatment, called PRRT (Peptide Receptor Radionuclide Therapy), works like a guided missile at the microscopic level. Lutetium-177 attaches to a molecule designed to seek out receptors that NET cancer cells display abundantly. Once the molecule finds its target, it delivers radiation directly to the tumor while sparing surrounding healthy tissue.
In late 2022 and early 2023, Jud received four treatments, eight weeks apart. Each session required him to spend the day at Mayo's nuclear medicine department, where specialized technicians administered the radioactive treatment.
"To a person, they were so enthusiastic about their work," Jud said. "They could see the help it was providing to people, and it was kind of infectious to be around their energy."
The early scans brought encouraging news. Most tumors were shrinking or staying stable. But his largest liver tumor initially appeared to be growing. His medical team recognized what was happening: the tumor was swelling as it died—a phenomenon called pseudoprogression, where tumors temporarily enlarge before collapsing.
By the end of treatment, that massive softball-sized tumor had gone almost completely necrotic—essentially dead.
The success of the lutetium-177 treatment completely transformed Jud's options. What had once been dismissed as too risky suddenly became not just possible, but promising.
"Lutetium-177 DOTATATE opened the door for me to have surgery," Jud said. “Without it, the chances of success would have been very, very low."
In November 2024, surgeons were able to remove all visible tumors—a success that medical scans confirmed.
Eight months after surgery, Jud made a remarkable discovery in his medical records. His Ki-67 index—which measures how fast cancer cells divide—had plummeted from 25% at diagnosis to under 1%.
The lutetium-177 treatment had done more than shrink his tumors. It had transformed them from Grade 3 (highly aggressive, rapidly dividing cells) to an exceptionally slow growth rate. His medical team believed the radiation broke so many DNA strands that it fundamentally changed how his cancer behaved.
Today, Jud has no evidence of disease and is cautiously optimistic about his future. He knows his journey with Stage IV NET isn't over—microscopic cells may still be present—but the profound response to treatment has given him something invaluable: time.
"I hope to live at least another 20 years, if not longer," he said. "With radiopharmaceuticals, like what companies like SHINE help to produce, I really think I've got a shot at living to 75, 80, maybe even further."
Beyond his personal journey, Jud has channeled his experience into helping others, creating NENfolk.org as an educational resource and advocating for patient engagement in treatment decisions.
For families facing similar diagnoses, Jud's advice is both practical and encouraging: seek out specialists, stay informed with current research, and don't lose hope.
"Make sure you're basing your research on good, up-to-date information, and not on something that somebody might have told you on a Facebook group, or that is based on information from 5 years ago. The world and the understanding of how these therapies work in your body has changed so much."
Jud's story shows the promise of precision medicine. As therapies like PRRT expand to more cancers, stories like his offer concrete hope to families navigating their own diagnoses.
