Johnny Borgstrom: Overcoming Stage IV Melanoma, Thanks to a Clinical Trial
In October 2017, Johnny Borgstrom of Big Cabin, Oklahoma, noticed a bump on his head. He mentioned it to his primary care doctor, who set up an appointment with a dermatologist for February.
By November, the bump had grown to the size of a nickel. The next month, the bump was the size of a quarter and had started to bleed. That’s when Johnny’s daughter, who works for an urgent care provider, got a colleague to help find a dermatologist who could see him soon.
A biopsy revealed that Johnny had an aggressive form of melanoma, and the dermatologist sent him to a surgeon in Tulsa–nearly 60 miles away.
“I have no history of cancer in my family. I was shocked. It was devastating,” recalled Johnny, now 70, who retired from the United Parcel Service after 36 years.
Over the next three months, from January to March 2018, he had three surgeries, including one that revealed that the melanoma had spread to his lymph nodes. A follow-up exam found that the cancer had spread to Johnny’s lungs.
That’s when Johnny decided he wanted a second opinion. His daughter suggested The University of Texas MD Anderson Cancer Center in Houston.
“I thought for a second, because that was a 12-hour drive. I really did not want to drive that far. But eventually I decided to go to MD Anderson. So that was the start of my journey,” Johnny said.
A lung biopsy confirmed that Johnny had stage IV melanoma. His oncologist, Hussein A. Tawbi, MD, PhD, mentioned a clinical trial testing a therapeutic combining the immune checkpoint inhibitors, nivolumab and relatlimab-rmbw, for melanoma and asked if he would be willing to participate.
“People don’t live very long with the stage of cancer I had,” Johnny said, “So I told him, ‘Let us do it if it would save another child’s or adult’s life, even if I did not make it’.”
In June 2018, six months after his initial diagnosis, Johnny started receiving the investigational treatment, which involved an infusion every 28 days. Each time, he and his family had to travel to Houston for the treatment.
“I thought to myself that we’re going to be positive,” Johnny recalled. “Every time we were in Houston, we did something fun. We made our 12-hour-long trip a positive family affair,” Johnny said.
Johnny had a great experience with his cancer care team.
“The nurses and the doctors were part of my family, and we were part of their family. It was just an unbelievably great experience,” Johnny said.
Those relationships with his care team were key, especially during COVID-19, when Johnny’s family couldn’t accompany him into the hospital for treatments.
“My family members had been my supporters throughout, even when they were not with me. Back home, I had people praying for me. God was with me all the way through, and arranged for all of this, the doctors, the medicine, everything. It was just like another treatment. I had no fear,” he said.
Johnny’s cancer was responding well to his treatment. In June 2019, the cancer had disappeared completely. Even though Dr. Tawbi was comfortable taking Johnny off the clinical trial, Johnny decided to continue participating in the study. His last treatment was in May 2020.
During the course of his treatment, Johnny experienced some side effects related to his heart, thyroid, and eyes, but his cancer care team had prepared him well in advance and was readily available for assistance when he needed it.
“My doctors were amazing. Dr. Tawbi explained to me everything that could happen because of the treatment. So, it was not a surprise to me,” he said. “My quality of life is great.”
And he has been cancer free since May 2020.
Johnny’s positive experience and outcome from participating in the clinical trial has made him an enthusiastic advocate for clinical research.
“I have lost close friends to cancer. I tell anyone who has cancer: ‘Don’t be afraid of a trial. Go for it. Doctors take the greatest care of you. You are not alone,’” Johnny said.
Johnny continued with a message for cancer researchers, adding: “Keep doing what you are doing. Keep looking for new medicines to cure cancer. Keep up the good work.”
He added that policy makers need to robustly fund cancer research. “Researchers need the funding to find new treatments for cancer,” he said.