Ellen Goldberg, NBCDFW.com
One-time Dallas Mavericks prospect, Ray Johnston, who has survived four bouts with cancer is showing remarkable progress thanks to an experimental drug.
Ray Johnston knows about racing the clock -- and beating the odds.
The one-time Dallas Mavericks prospect has survived four bouts with cancer.
On Thursday, his doctors released new information about his case, charting Johnston's recovery and his remarkable progress thanks to an experimental drug that is not even available in the United States.
Johnston was 24 years old when he was diagnosed with a rare form of leukemia in 2004 a few months after making it onto the Mavericks' summer league team.
Doctors put Johnston in a medically induced coma, believing it was the only way he would survive.
"I was in a coma for about two and a half months, woke up about the same time as Bush won the re-election and the Red Sox won the World Series," he said. "That's kind of what I remember as I was coming to."
He has had a roller coaster of relapses and remissions in the years since.
"They told my parents, often gave my parents a couple warnings a couple days that, 'You may want to say your last' kind of deals," Johnston said. "You know, hearing that was kind of tough."
His most recent relapse was in June 2009. His doctor at UT Southwestern Medical Center suggested an experimental drug that is only approved for treatment in Japan.
"He said, 'Well, I've thrown the kitchen sink at you, but there is this clinical trial that either you're going to have to go to Chicago or we're going to try to get what's called 'compassionate use,'" Johnston said.
Dr. Robert Collins at UT Southwestern secured the drug for Johnston, who has been cancer-free ever since.
"I've relapsed four times since that initial diagnosis," Johnston said. "Of layman's terms, I've had leukemia five times in seven years, and for me to be in remission on a clinical trial drug that has such low side effects and to pretty much feel normal -- minus about 20 pounds of muscle -- then yeah, I just kind of giggle a lot."
While leukemia robbed him of his basketball career, it ended up launching his musical career and the Ray Johnston Band.
"I'd rather be playing Game 2 [of the Western Conference Finals] right now, but this is a pretty close second," said Johnston, as he waited to take the stage at a Dallas fundraising gala.
Johnston's form of leukemia is very rare, representing just 5 to 8 percent of leukemia cases. The experimental drug he's been taking for the last year and a half is approved for treating cancer in Japan but is still in trials here in the United States.
His doctor is so impressed with Johnston's prognosis that he recently wrote it up as a case study for the Journal of Clinical Oncology.