Metastatic melanoma survivor finds hope in clinical trials

Joey Nelson has always loved the sun. “I sailed growing up,” he says. “Every Saturday we’d go and I’d get sunburned like crazy, not even thinking about putting on sunscreen.”

With fair skin, red hair and moles, Joey was already at increased risk for skin cancer, so he wasn’t exactly surprised by his melanoma diagnosis. The skin cancer first showed up on his leg in 1986.

After having the melanoma removed with a skin graft and lymph node biopsy, he remained cancer-free for more than 20 years. During that time, Joey and his wife bought a 22-acre farm southwest of Houston, where they continued to spend time outdoors, tending to their cattle.

In 2012, the cancer returned. Joey had several more surgeries and an isolated limb perfusion. But when the melanoma kept coming back, his sister urged him to come to MD Anderson.

“She said this was the place to be,” Joey says. “There’s so much opportunity because they do so much research.”

Immunotherapy clinical trials for melanoma

In May 2013, Joey came to MD Anderson, where his doctor recommended an immunotherapy combination clinical trial. Since previous surgical and chemotherapy treatments had failed, Joey didn’t hesitate to try immunotherapy.

“I’m optimistic,” he says. “The drugs were already approved; it was just the combination that was being tested in the trial.”

Other than gaining water weight, the combination of a cytokine therapy and a peptide vaccine seemed to be keeping his melanoma under control. Joey spent a year rotating one week at MD Anderson for IV infusions, one week at home recovering and one week back at work.

In March 2017, during his final scan for the clinical trial, Joey learned that the melanoma had spread to his jawbone and liver. In September, he learned it had also spread to his brain. Until recently, stage IV melanoma -- especially with brain metastasis -- had a poor prognosis, but Joey took a practical view of the disease.

“I cried like crazy for one day, but then I had to get it straight in my head that I can’t let this affect me,” Joey says. “I wasn’t even considering that cancer could end my life. Going to the doctor was just added on to my list of things to do.”

When the cancer came back, Joey became eligible for a different clinical trial that combined an immune checkpoint inhibitor with a targeted therapy. Joey enrolled in the trial as soon as his doctor recommended it. He couldn’t eat for two hours before or after taking the daily oral medicine for his second clinical trial, so he scheduled his meals around it.

“It’s all about time management,” Joey says. “It’s just something that you make part of your life. Don’t let it consume your life.” 

Within nine months of starting the second clinical trial, all of Joey’s melanoma metastases were gone. He continues to return to MD Anderson every three months for scans with Hussein Tawbi, M.D., Ph.D., and to see Jean Tayar, M.D., for treatment of the joint pain he developed during the second clinical trial.  

Practicing skin safety and supporting other cancer patients

These days, when Joey goes out to do farm chores, he wears long sleeves, a big hat, sunscreen and – at his wife’s urging – avoids staying outdoors during the late afternoon when the sun is highest.

Now that he’s nearing retirement and the two years cancer-free milestone, Joey and his wife are looking for ways to give back and help other cancer patients. On Sept. 21, he’ll be honored at the 11^th Annual Steps Against Melanoma Walk, hosted by the AIM at Melanoma Foundation and MD Anderson. The event raises funds for melanoma research and includes free skin screenings.

“I’ve been real fortunate that MD Anderson has given me the opportunity to be on these clinical trials and that I’ve had such huge success with it,” Joey says. “I want others to know there’s hope.”

Register for the 11th Annual Steps Against Melanoma Walk on Saturday, Sept. 21 at MD Anderson.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.