Relationships at the heart of brain tumor care

Robin Manansala was just 25 years old when he collapsed and had a seizure on a basketball court in San Jose one spring night in 2019. He was rushed to a nearby hospital, where an MRI revealed a tumor. It was an oligodendroglioma, his doctor at Kaiser Permanente told him.

“I was crushed. Just hearing the name of it, I thought my life was over,” Robin said.

His life was rich and only just getting started. A patient care technician at a dialysis clinic by day and a highly sought-after DJ by night, he had a solid group of friends and a girlfriend.

Three months later, he says he was crushed again when he learned the surgery to remove the tumor had left residual tissue behind.

He knew what lay ahead. He dreaded what chemotherapy and radiation would do to his quality of life. “It seemed like something you would only want to use as a last resort.”

But he wouldn’t have to resort to these treatments.

Stanford Brain Tumor Center had opened a clinical trial to Kaiser patients and Robin was eligible for it. The phase 3 randomized, double-blind, placebo-controlled INDIGO trial would compare the efficacy of once-daily oral vorasidenib to placebo in people with residual or recurrent grade 2 glioma with an IDH1 or IDH2 mutation who had undergone surgery as their only treatment.

Aiming to avoid chemotherapy for as long as possible, Robin knew right away that the trial was the best option for him. His care team agreed.

“The longer we knew Robin, the better we understood that his DJ-ing, his travel, his girlfriend were all very big parts of his life that he wanted to continue with,” said Seema Nagpal, MD, a neuro-oncologist and the site principal investigator (PI) on the study. “His life is so good. Delaying chemotherapy and radiation was in keeping with his goals.”

Over the course of the two-year trial, Robin and his care team, which included Dr. Nagpal as well as Gwen Coffey, NP, and Eleanor Villanueva, PA, grew close. These relationships, for Robin, were a hallmark of his experience in the clinical trial.

“The care that I received at Stanford was like no other,” he said. “Every time I went into the office, they would ask me about my work, or my DJ-ing, or ask to see pictures from my trip to Hawaii. They made me feel like everything was comfortable and everything was cool.”

From the start of the trial, Robin waited for the telltale signs of nausea or headache that he thought would indicate he was in the experimental arm. When those symptoms never came, he was convinced he was taking placebo. But his trust in his providers to make the best recommendations for his care alleviated any fears he might have had about taking a two-year hiatus from active treatment.

Oligodendroglioma is a slow growing cancer, Dr. Nagpal had explained to him. With regular MRI surveillance, Robin could afford to be on placebo.

“Because we knew him, we were able to help him feel comfortable staying on the study. ‘Even if you’re on placebo,’ we told him, ‘that is still the right decision for you,’” Dr. Nagpal said.

Knowing her patients well, Coffey adds, helps her provide better clinical care. When clinicians understand what a patient’s day-to-day life is like; what they enjoy; what’s important to them, she says, they are better equipped to pick up on subtle changes that could be signs of a change in their condition. A change in Robin's busy routine, for example, could indicate tumor growth.

“He has all this energy to work all day and then do DJ gigs at night. Just booking these gigs and then participating in them, it takes so much cognitive ability and multitasking,” Coffey says. “If he said he didn’t have the energy anymore or that he was having difficulty doing the job, that would worry me.” 

For Villaneuva, relationships are an essential part of the kind of care wants to provide. “We don’t treat the tumor or the disease. We treat the whole person,” she says. “That’s what makes me want to come to work every day. I am not just giving treatment. I’m taking care of a person who has a life.”

After two years, the trial was deemed positive and it was unblinded. Robin was touched that Dr. Nagpal called him in the evening after hours as soon as she got the news. She was eager to share it.

“It was exciting to be able to say, ‘The drug is working, but you weren’t on it, so now you have the opportunity to be on the active drug, which could mean your tumor may not just slow down. It could shrink,” Dr. Nagpal said.

Though Robin had suspected he was taking the placebo all along, he was at peace with it. “I knew that if anything were to harm me, they would take me off the drug or the placebo right away and get me the treatment that I needed to combat this disease.”