THURSDAY, Sept. 23 (HealthDay News) -- It was August 2004, and
24-year-old Ray Johnston was living his boyhood dream.
He'd just been plucked from his life as a mortgage broker and
plunked down on the courts of the National Basketball Association's
Dallas Mavericks' summer training camp after catching a talent
scout's eye at a local tournament.
But a small on-court collision with another player led to what
Johnston thought would be a routine surgery. Following the surgery,
the bleeding wouldn't stop, however.
The next thing Johnston knew, people were discussing George W.
Bush's re-election victory and the Boston Red Sox' first World
Series win in 86 years.
Johnston had been in a coma for more than two months.
Time wasn't all that he'd lost. When he awoke, he also found out
he'd been diagnosed with acute promyelocytic leukemia, a rare form
of blood cancer that strikes about 1,500 people a year, according
to the U.S. National Cancer Institute.
"The odds of me making the Mavericks are about the same as the odds of getting this disease," Johnston said during a recent interview.
But Johnston had defied the odds all his life, and he wasn't
about to quit.
A native of Montgomery, Ala., he'd made his high school varsity
basketball team as an eighth grader, and later earned a slot as a
backup point guard as a "walk on" at the University of Alabama.
"He is the ultimate warrior," Mark Cuban, the billionaire owner of the Dallas Mavericks who considers Johnston one of his few heroes, told the Dallas Observer. "He never is afraid of the fight, and no matter how difficult, he finds the bright side."
When the 6-foot, 3-inch Johnston was diagnosed with the
leukemia, the disease had invaded about 84 percent of his body.
Because he was going into shock, doctors placed him in a
drug-induced coma to help give his body time to heal. While in the
coma, his heart stopped beating twice, and he had to have seven
Even though he survived the coma, he was still in great danger.
Now, it was time to start chemotherapy to try to beat back the
But each time the toxic medicines seemed to work, the disease
came back. He endured several different chemotherapy regimens and a
bone marrow transplant.
"Cancer treatment has just been constant for six years for this guy," said Johnston's doctor, Dr. Robert Collins, director of hematological malignancy and the bone marrow transplantation program at the University of Texas Southwestern Medical Center in Dallas.
"In late 2009, the cancer started coming back, and I felt like we were losing ground," Collins explained. "I had to be frank with Ray and I said, 'Things aren't looking good.' "
Recalling that discussion, Johnston said, "I asked Dr. Collins a
very blunt question -- 'Do you think I'll live past 33?' He said,
So, that afternoon, Johnston started making phone calls to
musicians he knew and soon the Ray Johnston Band was born. He was
hell-bent on making the most out of whatever life he had left.
While Johnston was busy forming his band (country rock with more
than a nod to Dave Matthews), Collins was busy searching for
treatment options. Soon, he found what he believed might be
Johnston's best hope, a new drug called Tamibarotene. It's an oral
medication that specifically targets the APL cancer cells and
doesn't cause a lot of other side effects typical of chemotherapy.
While Tamibarotene has already been approved for use in Japan, it
has yet to receive approval from the U.S. Food and Drug
So, Collins called the drug's manufacturer, CytRx, which is
currently conducting a phase 2 study on the drug in the United
States, and requested a so-called "compassionate use protocol."
When a patient is facing a life-threatening illness, and no other
viable treatments are available, the FDA will sometimes allow the
use of an unapproved experimental drug. Collins got the OK to use
the drug on Johnston.
When Johnston started the medication, more than 30 tumors
riddled his body. Four months later, all the tumors were gone.
"He had a complete solid tumor response. To see this sort of depth of response is very unusual, and I'm very hopeful that the remission will last," Collins said.
An added bonus, Johnston said, was that the drug had very few
Johnston has been cancer-free for eight months now and is back
living the life of his dreams in Dallas. While he may not be
playing for the Mavericks, the Ray Johnston Band has recorded an
Sweet Tooth, and is touring, opening for artists like Jimmy Buffet, Los Lonely Boys, The Fray and The Cure.
Blessed with boundless enthusiasm, Johnston also runs the local
division of the Heroes Organization, which helps prepare high
school basketball players hoping to get a college scholarship.
Besides his new medication, Johnston credits his faith, the
strength of his family and friends and a positive frame of mind for
helping him through the darkness of his cancer treatment.
He said his favorite proverb sums it all up: "A cheerful heart
is good medicine to the soul, but a downcast spirit dries the
Added Collins: "Ray is a model for how a cancer patient can
live. His tenacity and strength and the way he's living life to its
fullest, it's a lesson we can all take from him."
To learn more about acute promyelocytic leukemia, visit the
American Cancer Society.
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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