When a Clinical Trial Is Your Best Chance at Survival
You’re not a guinea pig. You’re actually getting the first exposure to what could be a breakthrough drug.
When computer professional Don H., 61, was facing a grim prognosis from chemo-resistant lung cancer, he did what came naturally: he took to Google to research his options. He quickly came across articles on PD-1 immunotherapy and decided to learn as much as he could about it. “I printed everything I could find,” he says. “I had binders and binders of stuff.”
The promising early results with PD-1 immunotherapy made him want to try the therapy. When a lung trial finally opened, Don wasted no time in signing up.
He began receiving the PD-1 targeting drug Keytruda® (pembrolizumab), made by Merck, in July 2013, at The Angeles Clinic in Santa Monica, CA. He’s now considered a “lung cancer poster boy,” since his response was so dramatic.
We spoke with Don about his experience on the clinical trial and why he thinks patients receiving experimental treatment should not feel like guinea pigs.
CRI: How did you decide you wanted to do an immunotherapy trial?
Don: I had some terrible side effects on chemo. I lost all my taste buds. I was sick all the time. Had terrible eye problems, like I was looking through wax paper. I fell into the pool and almost drowned. You can get loved ones to stay with you for a while, but they still have to work, so you can’t have people with you all the time.
Then I did the FoundationOne test, where they check 600 different genes. At the end of it, they tell you what known FDA-approved chemotherapies will work with your specific tumors. They said there were no known FDA drugs that will work with my cancer. That pretty much convinced me. At that point, my tumor was growing at 20 percent a month. This was July 2013. I wasn’t expected to live past December.
CRI: Had you heard specifically about PD-1 therapy before you went on it?
Don: I saw a news story about it, and then I went on to Google and tracked down more information. There was one story about a guy with lung cancer who somehow got on a melanoma trial, and the PD-1 knocked out his lung cancer. That got me all excited. I then began researching every day about PD-1 and where I could get it, and how I could get it, but nobody had any lung trials. I tried to bide my time until somebody opened a lung trial that I could get into.
CRI: How did you find out about The Angeles Clinic?
Don: One of my original doctors from LA recommended it. This clinic is really small. They opened a new building, quaint little Tuscany-looking building, like it came out of Italy. Really, really nice staff. When you walk in there, you’re like family. Everybody knows you by name and they’re all very friendly to you. My doctor hugs me every time she sees me. I’ve never had a doctor hug me, never ever. My doctor is Dr. Ani Balmanoukian—what a sweetheart.
The Angeles Clinic specializes in clinical trials. Most of the other people I see in the clinic are melanoma patients, and they’ve been having some amazing results. I’ve actually seen tumors on people’s faces and ears disappear in front of my own eyes.
CRI: How soon did you know the immunotherapy treatment was working for you?
Don: My first CT scan [in September 2013] showed no improvement, but it stopped the 20 percent growth. Immunotherapies can take 60 to 90 days to get rolling. By the second scan I started to see results and then by the third and fourth, it started moving very fast. By July 2014, the scans showed a 98 percent reduction in the size of my tumors.
CRI: Did you have any side effects from the immunotherapy?
Don: When I first took it, I didn’t have side effects. It wasn’t until after the second infusion that I started to get a sore mouth, sore gums, itchy spots. And I get fatigue. Usually like 3:30, 4 o’clock in the afternoon, I’ll just sit down and take a half hour nap and then I’m fine.
Other than that, I have a normal life. I do everything that anybody else can do—dune buggies, motorcycle riding, jet ski, water ski.
CRI: Did they treat you for the side effects?
Don: They tried to give me prednisone. But I didn’t want to do anything that was going to suppress my immune system. So I said no to steroids. I just battled it out.
CRI: Was it logistically challenging to participate in the trial?
Don: The best thing about The Angeles Clinic is everything is in-house. If I do a CT scan and a blood workup, by the time the doctor sees me, she has both results. It’s amazing. No tomorrow, no two days, three days later, it’s the same time when you’re in the office with her.
CRI: What would you tell another patient who was thinking about participating in a clinical trial?
Don: Don’t think you’re a guinea pig. That seems to be the biggest fear among the people who first walk into the clinic. But I tell people, “You’re not a guinea pig. You’re actually getting the first exposure to what could be a breakthrough drug.”