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FDA program gives terminally ill Tigard teacher hope

Steve Lewis wants to spread word about treatment options for terminal patients

SUBMITTED PHOTO - Steve Lewis was diagnosed with terminal mesothelioma last year, but hes hoping an experimental drug might be able to help extend his life.For 30 years, Steve Lewis taught middle schoolers about science.

Now retired, the Tigard resident is still teaching. But this time, he’s hoping to educate the public about an often overlooked branch of the healthcare system — the nation’s “right to try” laws and federal programs.

Lewis, who lives near Tigard High School, has terminal mesothelioma, a very rare cancer that attacks the lining of the stomach, heart and other organs.

Lewis estimates he has about six months left to live, but he’s fighting every step of the way.

Next week, Lewis will get his first experimental treatment as part of a relatively unknown program by the FDA that helps terminal patients treat their diseases.

Lewis tried conventional chemotherapy, he said, with disastrous results.

“My first chemo experience was very intense, and boy, I didn’t survive it long,” Lewis told The Times this week. “I was supposed to do four sessions; I did two and I lost enormous amounts of weight. It was bad stuff.”

The FDA is charged with making sure that all drugs put onto the market are safe for the general public, but the approval process is long, sometimes taking more than a decade to get a product into patients hands.

In January, Oregon became the 24th state to enact “right to try” laws. The laws allow terminally ill patients the ability to take drugs that may help extend their life, but have not yet been approved by the U.S. Food and Drug Administration.

“You get to a point when you have an illness like this (where) there’s just nothing left to do,” Lewis said. “You’re now in palliative care. We try to control the pain, and at that point, you know you’re just going downhill.”

The exceptions are only granted to about 1,000 patients each year, according to RightToTry.org. Often, patients die before they qualify or complete the process.

“One of the big problems with (mesothelioma) is that nobody gets it,” Lewis said. “There’s only about 1,000 people a year diagnosed with it. No drug company is going to want to spend the money to fight it; that’s not feasible for anybody to spend money on it at all. That’s where things like ‘Right to Try’ become awesome.”

‘Any hope is good hope’

SUBMITTED PHOTO - Steve Lewis has always considered himsel to be athletic. He says he still feels great, despite his mesothelioma.Talking to Lewis, you’d never know what he’s going through.

Lewis is a scuba diver, a runner and a skier. He describes himself as an active and athletic person.

“The ironic thing is that I feel great. I’m exercising. I’m very active,” the 58-year-old told The Times' news partner, KOIN 6 News, which reported on his condition this week. “I just happen to have this weird growth inside of me that is trying to kill me. So, it’s irritating.”

Lewis’ wife learned about Oregon’s new “Right to Try” law and began researching the program.

Eventually, Lewis was accepted into a larger FDA program known as “Expanded Access.” The program is similar to Oregon’s law and allows patients to take experimental treatments and investigational drugs for serious diseases or conditions.

“My wife is tenacious,” he said. “The moment she found out I had cancer, she was attacking it.”

Oregon’s right to try law is so new, Lewis said, many people haven’t heard of it or the FDA program he’s enrolled in.

“If you’ve got a terminal illness, you may have reached the end of what you think is your bag of tricks that your oncologist can pull out and use,” he said. “But there may be something else you can do. There may be access to some drugs that you’re not aware of, that the FDA hasn’t approved for use in this case and it might be very effective.”

Next week, Lewis will begin taking an infusion of Kevpruda, an experimental cancer treatment drug.

“It’s the same cancer drug that Jimmy Carter took,” Lewis said.

But Lewis said that neither he, nor his family, are deluding themselves about the experimental treatments.

“Any hope is good hope at this point,” he said. “It might mean saving my life. So it means quite a bit, it means a lot to my family.”

‘Enjoying everything’

Lewis was a teacher for 30 years in the Beaverton School District, teaching science at Hiteon Elementary School, and Meadow Park and Mountain View middle schools.

Lewis retired in December, and he said that a career in the classroom gave him some perspective.

“You can’t just take things too seriously. Life is just not serious,” he said. “Take out of it what you can and enjoy it.”

Teaching middle school gave him a positive outlook about everything, he said, because for middle schoolers “so many days go up and so many days go down.”

“I’m always looking for the best,” he said, “so I very much plan for the worst, too.”

“I want people out there like us, who are at the end of their rope, to know that they have some other alternatives,” he said. “I know an awful lot of people where I get treatment and I wonder, ‘How much do they know about how to navigate the system?’ If it hadn’t been for my wife, I wouldn’t know any of this stuff.”

He said he’s learned to take things one step at a time.

“I don’t know what’s going to happen next,” Lewis said. “I’m kind of enjoying everything I’m doing right now, and my family. Really, I’m living.”