Life after lymphoma

Clinical trial helps Barry Rapport tackle treatment

Barry Rapport remembers the scene clearly. He was working in his office at a trust company when a doctor phoned. The physician asked if his family had a history of cancer.

It was October 2020.

“I remember dropping all of my files that I was holding and going a little numb,” said the Chicago resident, now 27.

One day earlier, Rapport had undergone a CT scan at an urgent care center to determine why his cough had lingered for months.

But he had neither COVID-19 nor allergies. He had lymphoma.

He lacked the telltale symptoms: night sweats, weight loss and fatigue. Yet the scan revealed swollen lymph nodes throughout his body, and fluid building up around his heart.

Rapport was stunned. He was 25 years old and felt healthy, working out five to six times a week.

The physician advised Rapport to go to an emergency room. He did.

A needle biopsy was inconclusive. That December, he underwent diagnostic surgery to remove a lymph node in his left armpit.

The results came back Dec. 16 and physicians’ suspicions were confirmed: Rapport had stage IV lymphocyte-depleted Hodgkin’s lymphoma.

“The roughly two months of waiting until you actually get the diagnosis is the absolute worst,” said Rapport. “There were a lot of sleepless nights. And you don’t think about anything else for those two months.”

Now it was time to focus on treatment. Through a friend of his aunt’s, Rapport learned about University of Chicago Medicine lymphoma expert Sonali Smith, MD. Smith immediately eased her patient’s anxieties about online claims he’d read about this particularly rare form of blood cancer.

Two weeks after receiving a diagnosis, Rapport received his first infusion as part of a six-month course of chemotherapy at UChicago Medicine. On Smith’s recommendation, he signed up for a clinical trial that allowed him to avoid taking bleomycin, a common medication used to treat Hodgkin’s lymphoma that can be toxic to the lungs.

“From a medical perspective, he responded really well to the treatment,” said Smith. “The first scan we did after two months showed that he was already essentially in complete remission.”

Still, treatment was a grind. Rapport experienced heartburn and hiccups. A medical patch he wore to stimulate white blood cell growth resulted in aching bones. The steroids that alleviated his nausea led him to gain 40 pounds.

“There I was, at 25, taking as many pills as I remember my grandmother taking,” said Rapport, who worked throughout his treatment to distract himself. “I remember being a few months in and just not recognizing myself — losing the hair doesn’t help with that.”

However, gaining those extra pounds was a positive development.

“He started to gain weight, which I know he didn’t want to do, but that was a good sign,” said Smith. Most patients struggle with involuntary weight loss during chemotherapy treatments, she said.

Rapport is now approaching his two-year cancer-free anniversary. He speaks openly about his challenges of navigating survivorship at such a young age — handling relationships with friends who didn’t react as he expected toward his illness; pinpointing renewed purpose in his career; and braving the vagaries of a body he no longer trusts.

He recently noticed a dark spot on his back and became concerned it might be an early sign of secondary skin cancer caused by his treatment. A dermatologist assured him it was only a bruise.

“They tell you if you can make it two years, three years, five years and you’re still clean that you’re considered cured, which is great,” said Rapport. “But I’m still going to hyperfixate on any little thing.”

He encourages people to see a physician if they’re worried about a health issue — and to avoid the internet if they have cancer.

“Your doctor knows best,” said Rapport. “Talk to people and talk to other patients. Don’t keep it to yourself. Try as much as you can to practice gratitude, because — thankfully — science has come a long way.”