Six months ago, Josh McCool was dying.
You wouldn’t know that from talking to him, though. When the 28-year-old Wasilla resident spoke with a reporter in late June, he was wrangling his two sons, ages 9 and 4, trying to get them ready for baseball.
That’s something he couldn’t have done last December, when he was in the throes of stage 4 cancer. At the time, he could barely walk, couldn’t speak and was spending 18 hours a day in bed.
Now, he’s back out fishing again, half a year after celebrating what he thought might be his last Christmas.
McCool’s oncologist, Hagen Kennecke, said he’s never seen such a rapid recovery before.
“Usually it takes a long time to get that sick, and it takes a long time for the body to heal, but he just bounced back," said Kennecke, who works at the Virginia Mason Cancer Institute in Seattle.
McCool and his doctor credit his dramatic improvement to a new form of radiation therapy that works by targeting a specific hormone found on certain kinds of cancer cells. The treatment was only approved by the FDA in 2017.
It had never been used to treat McCool’s rare form of cancer, Kennecke said, but McCool’s response to it helps the medical community better understand how the treatment can be adapted for other kinds of cancer.
“It’s information like this that helps us make it available to everyone who needs it,” Kennecke said.
Diagnosis and a spreading tumor
The rare cancer in question is called pheochromocytoma. McCool’s cancer made its first appearance in December 2016, when doctors discovered a tumor growing on one of his adrenal glands. The tiny organs, located on the upper part of the kidneys, secrete hormones the body needs to survive.
The tumor was surgically removed months later, and with it, McCool’s right kidney. For more than a year, that appeared to be the end of it.
Then the pain came back, and McCool wound up in the emergency room with what he thought was appendicitis.
Scans revealed something much more sinister. The way his mother, Wendy McCool, described it, he “lit up like a Christmas tree.”
The tumor had multiplied and spread, and now it was everywhere: his stomach, his lungs, his spine. The diagnosis was his worst nightmare — stage 4 cancer.
“Fear of death was instantly inside my head,” McCool said. “My son was 3 years old at the time, and it was just very, very, very, very frightening.”
That’s when he resolved to fight, he said, and it appeared science was on his side. The oncologist he was seeing recommended the new treatment — a sort of “liquid radiation," McCool said, that was fed into the body intravenously.
Actually getting the therapy would prove difficult, though. It took six months of medical evaluation before he was referred to Kennecke, and to complicate matters, Medicaid refused to cover what it called an “experimental” treatment, Wendy McCool said.
By the time McCool’s insurance approved the treatment — thanks largely, his doctor said, to a persistent nurse at Alaska Native Medical Center — his health had deteriorated quickly. In those six months, he lost more than 110 pounds.
“I was watching him just fade,” his mother said.
By Christmas 2018, he was using a wheelchair and struggling to breathe, and no longer had a voice. Even trying to walk from the couch to the kitchen would leave him winded for 10 minutes, he said. He was in a huge deal of pain, especially in his back.
His sister, wanting to ensure her older brother would be able to see her get married, flew up to Alaska with her fiance for an impromptu wedding, Wendy McCool said. An ailing Josh McCool officiated the ceremony.
Time was not on McCool’s side, though. By the time he was referred to Kennecke in late December and approved to start treatment, he could barely make it to the examination table. He said he wasn’t sure if he would survive the next few weeks.
A few weeks was the exact amount of time it would take to transport the medicine he needed to Seattle.
“I told the doctors honestly, I didn’t feel like I could make it,” he said.
That’s when another patient, who McCool said he’s never met but one day hopes to, stepped in.
That man, also diagnosed with cancer, was scheduled that month for his final round of treatment. He agreed to switch places with McCool to allow the Wasilla man to start his treatment sooner. Once he did, the results were almost immediate, Kennecke said.
Within one week of his first round of the therapy, McCool’s appetite returned, he started to regain his strength, and his pain began to abate. Each successive treatment pulled the tide of illness out a little further.
A series of photos taken by his fiancée, Shannon Mitchell, before each round of treatment shows a progressively more vivacious and happy-looking man.
Now, he said, he feels pretty close to his normal self. In June, he caught his first salmon in two years.
It was the best possible scenario. It’s also, according to Kennecke, one that’s consistent with research.
“Research studies have really shown some remarkable targeted responses for people who otherwise had no other treatment options,” he said.
Within the next couple of years, the treatment is likely to become available for prostate cancer, and researchers are looking at it as a potential treatment for certain kinds of breast cancers as well, Kennecke said.
McCool said that’s part of the reason he chose to share his story.
Doctors have identified two other people in the country with his form of cancer who are potential candidates for the treatment, he said, and both have expressed hesitation about it. He tells his story with those two patients in mind.
“It eats you from the inside out so fast that there’s no time to wait,” he said of the disease.
McCool will complete his final round of treatment in late July. After that comes the first scan he’s gotten since he started the therapy.
Whatever that scan reveals, McCool and his doctor both say the radiation therapy is not a cure. There’s a chance the cancer could come back, but if it does, evidence suggests the treatment could be used again as a tool to keep the tumors under control long-term, Kennecke said.
Regardless, McCool’s plans are clear:
“I just want to spend every day with the kids, spoil my kids as much as I can for the amount of time I’m here, and take advantage of the extra time I’m given right now."