Don H’s Immunotherapy Story

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.

I saw a news story about PD-1 therapy, 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.

One of my doctors recommended the The Angeles Clinic. 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.

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.

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.

They tried to give me prednisone to manage my side effects, 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.

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.

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.”