Ex-Dallas Maverick survives rare form of leukemia thanks to experimental drug treatment
Ray Johnston's goal in three years is for his band to sell out at the 1,600-seat House of Blues in Dallas. In eight years, he wants to pack the 6,400-seat Verizon Theatre in Grand Prairie, and by 2030, to play to tens of thousands of fans at Cowboys Stadium in Arlington.
Mr. Johnston's unmentioned goal, though, is to live another year after battling leukemia for the past seven. Despite four relapses, the former Dallas Mavericks basketball player is enjoying life as a rising musician in The Ray Johnston Band.
Although he credits God for his recovery, Mr. Johnston also gives thanks to Dr. Robert Collins, director of the Bone Marrow Transplantation/Hematologic Malignancies Program at UT Southwestern Medical Center, and the experimental drug that has killed his rare, stubborn form of cancer called acute promyelocytic leukemia.
"It's got to be inspiring to Dr. Collins to see that I'm alive because I'm supposed to be done by now," Mr. Johnston said of his painful yet rewarding journey, which was chronicled last year in an HDNet series called "Ray Johnston Band: Road Diaries."
Today, Mr. Johnston's self-described "happy rock" Dallas band is working on its second CD and booking about 100 shows a year. "My primary goal is to keep playing," Mr. Johnston said.
Tamibarotene, the drug that's kept the 32-year-old musician alive, is a retinoid drug that induces cancer cells to differentiate into mature cells and eventually die. Available only in clinical trials in the U.S., tamibarotene was sought for Mr. Johnston under a compassionate use protocol since he did not qualify for those studies and other treatments had been exhausted. The drug, approved only in Japan for cancer treatment, is being developed domestically by CytRx.
"It's amazing that he's still doing so well," said Dr. Collins, professor of internal medicine and senior author of a report on this case published online April 11 in the Journal of Clinical Oncology. "This drug happens to be just right for him."
Mr. Johnston's treatment with tamibarotene, which is considered 10 times more potent than all-trans retinoic acid, another retinoid commonly used to treat this type of leukemia, began in December 2009. He took the drug twice daily for 56 days, followed by a two-week break. Since then, Mr. Johnston has been taking the drug 28 days on, 28 off.
On April 18, he returned to UT Southwestern for a positron emission tomography (PET) scan, which showed his cancer had not relapsed for the fifth time.
"The type of acute leukemia he has is very rare. It's usually curable with current therapies, but as it relapses it becomes more resistant and harder to treat," said Dr. Collins.
Gambling on life, and success as a musician, doesn't scare the Alabama native who once dreamed of a professional basketball career. But cancer ended his NBA stint, which began when he won a spot on the Dallas Mavericks summer league roster during a Hoop It Up tournament in 2004.
Mr. Johnston didn't even know he had leukemia until that August, when he injured his leg in a pick-up game. He was diagnosed with compartment syndrome, a condition in which pressure in the muscle builds to dangerous levels. Following surgery, doctors were unable to control bleeding. They soon discovered that Mr. Johnston's body was riddled with advanced leukemia.
His treatment included chemotherapy, surgery and a bone marrow transplant. Mr. Johnston's type of leukemia, which affects soft tissues rather than blood and bone marrow, represents just 5 percent to 8 percent of acute myelogenous leukemia, the most common form of the disease.
Discouraged by failing treatments and the thought of his first bone marrow transplant, he nearly gave up hope. In 2006, a recommendation from a friend led him to Dr. Collins and UT Southwestern.
"When you achieve a life milestone that you're not supposed to, when you hug it out, you can see and feel Dr. Collins drop a tear on your shoulder. That's life. That's real," said Mr. Johnston.
Reality for this cancer survivor also means getting serious about music. Mr. Johnston has a lot of work ahead after launching the six-member band in September 2009. Some of the band's performances raise money for The Ryan Gibson Foundation, a Dallas-based nonprofit dedicated to leukemia research.
One of the songs on the band's first CD, "Sweet Tooth," is Rise & Go, based on a verse in the Bible, Luke 17:19. Mr. Johnston said it sums up "my last seven years."
"Wake up and I go outside, I see my blue sky, I'm happy to be alive
I got a tough upper lip, but a bottom little broken heart. When I look into the sky, I see my Maker's eyes. That's when I know my Plan B for eternity is strong as gold, so I rise and go.
Provided by UT Southwestern Medical Center
- Fewer platelets could be used for some cancer and bone-marrow transplantation patients Mar 10, 2010 | not rated yet | 0
- MR arthrography is more accurate than MR in diagnosing shoulder tears Jan 06, 2009 | not rated yet | 0
- MR imaging helps predict recurrence in prostate cancer patients May 04, 2007 | not rated yet | 0
- Key to fighting drug-resistant leukemia found May 18, 2011 | not rated yet | 0
- MR enterography eliminates unnecessary radiation exposure in patients with small bowel disease Apr 23, 2009 | not rated yet | 0
- Motion perception revisited: High Phi effect challenges established motion perception assumptions Apr 23, 2013 | 3 / 5 (2) | 2
- Anything you can do I can do better: Neuromolecular foundations of the superiority illusion (Update) Apr 02, 2013 | 4.5 / 5 (11) | 5
- The visual system as economist: Neural resource allocation in visual adaptation Mar 30, 2013 | 5 / 5 (2) | 9
- Separate lives: Neuronal and organismal lifespans decoupled Mar 27, 2013 | 4.9 / 5 (8) | 0
- Sizing things up: The evolutionary neurobiology of scale invariance Feb 28, 2013 | 4.8 / 5 (10) | 14
Why is zone 1 in liver more prone to ischemic injury?
May 23, 2013 Hi, Is it because around central vein, there is only deoxygenated blood from the vein where as in the periphery there is hepatic artery. Also why...
How can there be villous adenoma in colon, if there are no villi there
May 22, 2013 As title suggest. Thanks :smile:
How can there be a term called "intestinal metaplasia" of stomach
May 21, 2013 Hello everyone, Ok Stomach's normal epithelium is simple columnar, now in intestinal type of adenocarcinoma of stomach it undergoes "intestinal...
Pressure-volume curve: Elastic Recoil Pressure don't make sense
May 18, 2013 From pressure-volume curve of the lung and chest wall (attached photo), I don't understand why would the elastic recoil pressure of the lung is...
If you became brain-dead, would you want them to pull the plug?
May 17, 2013 I'd want the rest of me to stay alive. Sure it's a lousy way to live but it beats being all-the-way dead. Maybe if I make it 20 years they'll...
MRI bill question
May 15, 2013 Dear PFers, The hospital gave us a $12k bill for one MRI (head with contrast). The people I talked to at the hospital tell me that they do not...
- More from Physics Forums - Medical Sciences
More news stories
In recent years, microRNAs (miRNAs) and other non-coding RNAs are small molecules that help control the expression of specific proteins. In recent years they have emerged as disease biomarkers. miRNA profiles have been used ...
Cancer 11 minutes ago | not rated yet | 0
Cancer cells spread and grow by avoiding detection and destruction by the immune system. Stimulation of the immune system can help to eliminate cancer cells; however, there are many factors that cause the immune system to ...
Cancer 12 minutes ago | not rated yet | 0
Researchers from London's Kingston University have begun a two-year study which could help prolong the lives of people with colorectal tumours.
Cancer 3 hours ago | 5 / 5 (1) | 0
Transformative research from Western University has identified new hormones in the body which may suppress breast cancer and stimulate the regression of breast tumors.
Cancer 4 hours ago | 5 / 5 (1) | 0
(Medical Xpress)—Curtin University researchers have found evidence that targeting specific cells in the body can reverse the effects of cancer on the immune system.
Cancer 4 hours ago | 5 / 5 (2) | 0
Women at a particular stage in their monthly menstrual cycle may be more vulnerable to some of the psychological side-effects associated with stressful experiences, according to a study from UCL.
38 minutes ago | not rated yet | 0 |
Biological processes are generally based on events at the molecular and cellular level. To understand what happens in the course of infections, diseases or normal bodily functions, scientists would need to ...
1 hour ago | 5 / 5 (1) | 0 |
(HealthDay)—Menopausal hormone therapy should not be used for prevention of coronary heart disease, according to a Committee Opinion from the American College of Obstetricians and Gynecologists (ACOG) published ...
44 minutes ago | not rated yet | 0
The news about youth and diabetes keeps getting worse. The latest data from the national TODAY diabetes study shows that children who develop Type 2 diabetes are at high risk to develop heart, kidney and eye problems faster ...
1 hour ago | not rated yet | 0
In Parkinson's disease, the protein "alpha-synuclein" aggregates and accumulates within neurons. Specific areas of the brain become progressively affected as the disease develops and advances. The mechanism underlying this ...
1 hour ago | not rated yet | 0
After studying noise in one French Quarter neighborhood of New Orleans to determine whether or not noise levels exceeded municipal ordinances, Annette Hurley, PhD, Assistant Professor of Audiology at LSU Health Sciences Center ...
54 minutes ago | not rated yet | 0