City of Hope Huntington Beach offers respite to patient with rare lung cancer

John Ryan likes to walk 5 miles every day.

He would hike sometimes, too, several years ago, going on a 12-hour hike in the Grand Canyon not long before his cancer diagnosis.

By all accounts, Ryan was a healthy middle-aged man. But at the start of 2019, he developed a cough that just wouldn’t go away.

An initial diagnosis of pneumonia led to a CT scan.

“That’s when they informed me I had a large tumor in my lung,” said Ryan, now 59, who lives in Westminster.

More scans showed cancer in more than a dozen spots. The primary concern was a rare type of cancer called EGFR-positive lung cancer, which represents about 10 to 15% of lung cancer in the United States.

Ryan had an even rarer mutation called Exon 20. In the United States, EGFR Exon 20 insertions represent approximately 12% of cases of metastatic EGFR-driven non-small cell lung cancer, according to Blueprint Medicines.

“Yeah, it was scary,” Ryan said. “You look like you’re not going to live very long with all of those tumors in your body.”

John Ryan, a 59-year-old Vietnamese American, left, and Dr. Danny Nguyen, a medical oncologist and hematologist with City of Hope Huntington Beach.

(Scott Smeltzer / Staff Photographer)

Ryan said he’s glad that he took the time to find a specialist. A 15-minute drive later, he went to Pacific Shores Medical Group, now City of Hope Huntington Beach. He met Dr. Danny Nguyen, an oncologist and hematologist.

“At that time, Exon 20 was known to be a driver of cancer, but there were no treatments on the market yet for it,” Nguyen said. “We got him plugged in, we saw him, then we saw that he had a mutation that qualified for the study.”

Ryan was put on a Stage 2 clinical trial for a drug called poziotinib. After visiting Pacific Shores in May 2019, he stayed on it for more than three years.

“You get on a treatment, stay on it as long as possible, and switch treatments when that stops working,” he said. “You daisy-chain these treatments. I was able to get 3 1/2 years out of that drug, which is a good length of time. The idea is you stay on the drug to extend your life, so that you can catch the next drug that’s in development.

“I would not have made it to the end of 2019 without this drug. I’m what you call a happy cancer patient, because I know what could have happened.”

John Ryan is currently going through a new clinical trial at City of Hope Huntington Beach.

(Scott Smeltzer / Staff Photographer)

After getting off poziotinib, Ryan underwent chemotherapy from November 2022 to this past February. He is now on a Stage 1 clinical trial at City of Hope Huntington Beach for a new drug, BLU-451, made by Blueprint Medicines.

He is one of the first in the country to test the innovative treatment.

“There’s only six places in the world that have it,” Ryan said. “The next closest locations are Colorado and Washington state ... It’s a very exciting new drug. When I was on the previous drug, my skin would all be wrinkly, and my fingers were unusable. With this new drug, I can use my hand. It’s a massive improvement.”

Ryan, like his doctor, is Vietnamese American, and research has shown that Asian Americans are often underrepresented in clinical trials. Only 1.6% of them participate, compared to 78.3% of white participants.

This, despite the fact that Asian Americans are the only cultural group in the country for whom cancer is the leading cause of death in men and women. For all other groups, that leading cause is heart disease.

But Dr. Nguyen said that Ryan has turned into a patient advocate, trying to erase a stigma around clinical trials.

“He’s benefited a lot from the clinical trials,” Nguyen said. “He actually knows a lot of my patients with similar lung cancers, and he’s helped guide them into understanding the disease, figuring out some treatment options and giving some tips into how to manage side effects. It’s nice seeing a patient like him get involved in that community as well.”

Ryan is doing better. Though his voice isn’t as strong as he’d like, he’s walking 5 miles a day again. He hopes to stay on BLU-451 for as long as possible, until he might make the leap to yet another clinical trial.

He turns 60 next month, but doesn’t have any big plans yet.

“I’ll have to come up with something [for a celebration],” he said. “I do feel extremely blessed, because 2019 was supposed to be my last year. I was cleaning my garage out so that my mom didn’t have to throw things away. When you think you’re going to die, you’re thinking, ‘there’s all these messes I have to clean up before that happens.’

“I never expected to get cancer. It was the last thing that I’d think about … but City of Hope is a God-send. I tell people that I’m one of the luckiest cancer patients.”