My husband, Scott, lies in bed at Cottage Hospital, so weak he can’t lift his head. He’s hallucinating, convinced that ants are marching across the ceiling.
But I sob with joy. Our oldest daughter dances around the room. The doctor grins. The nurse must think we’re insane.
It’s February 2016, one week before Scott’s 61st birthday, and this was his “breakthrough event,” the turning point of his cancer treatment.
Amazing new immunotherapy drugs, approved by the FDA just months before his diagnosis, have given Scott’s T cells superhero powers. They’ve eaten away the malignant tumor that had been growing behind his right ear, putting pressure on his brain. Now, without cancer to battle, his amped-up immune system is attacking his adrenals, causing hallucinations. It’s a serious side effect, but treatable.
Trained as a mechanical engineer, Scott does marketing and business development for a company that makes automation sensors. I am the Santa Barbara Zoo’s public relations director and teach PR at City College. We’ve been married more than 30 years. Until this point, Scott had never spent the night in the hospital.
Scott: I’m an active guy. In 2015, at age 60, I climbed Mt. Whitney for the third time and set personal records in both the Pier-to-Peak half-marathon and a full marathon.
In November while getting a massage, the therapist pointed out a bump above my ear. “I noticed that,” I said. “A tight muscle?”
“This is not muscle,” she said firmly. “You need to see a doctor. Now.” By the next day, I had seen two doctors and had a biopsy.
Weeks later, the results came in, and they were dire: spindle cell melanoma. Rare, fast-growing, it was already too large to be surgically removed. Traditional chemotherapy or radiation weren’t usually effective. We had few options.
By then, it was Thanksgiving. We told our two daughters, aged 16 and 21, and tried to stay positive. But we were frightened.
Then we got lucky.
On December 6, former president Jimmy Carter was all over the news. His brain cancer, a metastatic melanoma, was completely gone, thanks to a new immunotherapy drug treatment.
Inspired by this, we met with Dr. Bartosz Chmielowski, a UCLA specialist involved with immunotherapy drug trials. He told us that spindle cell melanoma is one of the few cancers approved for this treatment and suggested a “cocktail” of two drugs, Yervoy and Opdivo.
Better yet, Scott could be treated here, at the Cancer Center of Santa Barbara with Sansum Clinic, under the care of oncologist Dr. Mukul Gupta.
Scott: After weeks of searching, I finally had a team that knew how to help me. In the space of 10 minutes, I went from planning hospice to the possibility of living a normal life.
As I left the exam room, I was suddenly overcome with grateful sobs. A woman in the waiting room came up to give me a hug. Ironically, she probably assumed I had been given bad news. I was too overcome to explain, but her instinct was right — I needed a hug.
Cancer fools the immune system into thinking that it is part of the body. To oversimplify, the new drugs flip a switch in the cancer cells so the immune system can recognize and attack them.
Scott’s treatment plan was composed of four infusions of the two drugs, three weeks apart. Then we’d re-evaluate.
Scott: After my first treatment, I felt a slight burning sensation at the tumor site. The nurses assured us that this could happen.
But by the time I got home, it felt as if fire ants were swarming on my skull. I could not keep my eyes open, and the pain became unbearable.
An MRI the next day was astonishing. The tumor had rapidly disintegrated after just 24 hours. My enhanced T cells were fighting the cancer, faster than we expected. I just needed pain medicine.
Dr. Gupta was upbeat. “This means the treatment is working,” he said, lightly touching Scott’s arm. “It’s working.”
Once Scott’s pain was under control, life slowly returned to normal. He worked, took a business trip to Boston, and resumed running. The headaches stopped, as did the need for painkillers. We celebrated my birthday in January and planned for his in March.
In his State of the Union address last year, President Obama announced MoonShot 2020, a new cancer initiative, spurred in part by immunotherapy advances. “For the loved ones we’ve all lost, for the family we can still save,” he said, “let’s make America the country that cures cancer once and for all.”
But the costs are staggering — the drugs alone are $250,000. After paying our $5,000 deductible, Blue Cross/Blue Shield covered the rest.
Scott: While I am immensely grateful for the timing and the availability for these drugs, the cost shocked me. The company I work for changed ownership during my treatment, and our insurance changed, as well. Without Obamacare protecting my pre-existing condition, I would have been facing bankruptcy or a death sentence.
Scott’s second treatment three weeks later was uneventful, leaving only a lingering fatigue. The third left him exhausted. Two days before the fourth was scheduled, Scott collapsed in the bathroom. I called 9-1-1, which brings us to Cottage Hospital ER and his breakthrough event.
Steroids replenished his adrenals, his raving ceased, and he was released after five days. After staying home a week, he went back to work and started running moderately.
A month later, a PET scan could find no cancer anywhere. Follow-up scans in June and September were also clear.
“It’s a great time to be an oncologist,” I recently joked to Dr. Gupta. He nodded, serious. “It certainly is.”
Scott: They won’t say I’m “cured,” but my odds are very good. Of Dr. Chmielowski’s drug-trial patients, 90 percent with complete response, like mine, are alive five years later. Jimmy Carter is still going strong.
My failed adrenal system is managed with a few pills each day. Other immunotherapy patients have it worse and become diabetic and have liver damage, or colon issues. “You missed out on the explosive diarrhea,” Dr. Gupta noted. Yes, we’re lucky.
We’re lucky that life-saving drugs were available just when I needed them. Lucky that Santa Barbara has a cutting-edge Cancer Center and an outstanding staff. Lucky to be alive.
The Cancer Center is building a modern, new facility, bringing their physicians and support programs under the same roof. They are raising money to complete it, and we’ve written them a check.
Scott: I hope we never have to step inside the place.