Priscilla is the first Wisconsin patient treated with new neuroendorine tumor drug

In January, the FDA approved a new neuroendocrine tumor (NET) therapy, a radioactive, tumor-specific drug. Two months and dozens of hours of staff time later, the first patient at the UW Carbone Cancer Center - and in Wisconsin - received the treatment.

"It's the most positive treatment we've ever seen in neuroendocrine tumors, so we're pretty excited," said UW Carbone gastrointestinal oncologist Dr. Noelle LoConte. "Normally when a new drug is approved, we have the infrastructure in place and it's not a big deal to offer it to our patients. But in this case, because it's a radioactive drug, we had to build the infrastructure from the ground up."

NETs of the gastrointestinal tract arise from specialized cells known as neuroendocrine cells. They are considered rare, representing only around one-half of one percent of all newly diagnosed cancers. NETs are often slow-growing, though most patients eventually succumb to their disease. In clinical trials with the new drug, Lutetium Lu 177 dotatate (Lutathera), 65 percent of patients' tumors stopped growing after treatment, compared to only 11 percent who received a higher dose of a common NET therapy. Eighteen percent of patients' tumors shrank.

Priscilla Baerbock, a patient of Dr. LoConte's from Lake Geneva, was hoping to receive the treatment last summer. Diagnosed with NET in 2006, Baerbock estimates she has received at least a dozen different treatments for her cancer. As with many NET patients, these treatments worked for her for years, but her cancer eventually progressed. Without any other treatment options available, she and LoConte sought out clinical trial options, including the trial that eventually led to the FDA approval.

"I tried to get into the clinical trial in Iowa last year, but it was closed," Baerbock said.

True to her nature, she did not give up.

"She's modest, but she's strong and she's a fighter," said Ben Baerbock, Priscilla's son. "You have to be strong to go through this for 12 years. When treatments would stop working, she was always ready for the next one."

Her daughter, Jessica Newlun, added, "That's true of the staff here, too. They have been so willing to stay at the forefront of technologies and treatments."

LoConte is not sure if the Baerbock family knows exactly how much went into making the treatment available at UW Carbone. The FDA approved the treatment on Jan. 29, 2018, and physicians and staff here started moving immediately.

"When we thought the FDA was moving to approve the therapy, we started having conversations, but there's not too much prep work you can do until you get FDA approval," LoConte said. "I'm not exaggerating when I say 50 to 60 people were involved. NETs are a rare disease and they sometimes seem like they're forgotten, so it's nice to see so many people rallying around a really exciting treatment."

Clinicians and hospital staff from oncology to nuclear medicine to radiation safety to pharmacists all worked together to be able to offer the treatment at UW Carbone.

"As soon as it became available in Madison, we knew we wanted to come here," Newlun said.

With the first of four rounds of treatment now done, Priscilla Baerbock is able to go home to Lake Geneva, where she can continue to be active in her church and spend time with her children and grandchildren. She has to wait three days after each treatment round, when the radiation from the drug has reduced to safer levels, before seeing her family.

Lutathera is manufactured by Advanced Accelerator Applications. Due to the high cost of the drug, prior authorization is necessary.