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 cancer.
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, 'No.' "
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 Administration.
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 wil
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