Karen DeGray, Lymphoma
"Everybody connected to my treatment was beyond phenomenal."
Clinical Trial Saves Her Life
Karen DeGray noticed a lump on the back of her neck, but didn’t give it much thought. “I ignored it for a while; I thought it was a cold.”
Blood work revealed her platelets were low, and she was referred to an oncologist who discovered she had lymphoma, cancer that originates in the lymphocytes of the immune system. Additional tests identified an uncommon form of the disease known as mantle cell lymphoma.
Karen’s oncologist urged her to go to New York for treatment. “The treatment offered was a bone marrow transplant … six months of torture,” she says. “ I didn’t want to be very sick, and then die.” After deciding she wanted another option, she was referred to Izidore Lossos, M.D., a renowned hematologist and director of the Lymphoma Program at Sylvester Comprehensive Cancer Center.
The day of her appointment at Sylvester, Karen received surprising news that would prove to be her saving grace. “I got there, and he had just been approved for a clinical trial for mantle cell lymphoma.” Karen would become Dr. Lossos very first subject for the trial.
“Many experts consider mantle cell lymphoma the worst type of lymphoma,” explains Dr. Lossos. “Initially, it’s indolent, but widespread at the time of diagnosis. It’s very aggressive and grows fast.”
Dr. Lossos’ trial involved administering a new drug combination intravenously, one never used before to treat mantle cell lymphoma. To date, the University of Miami Miller School of Medicine is the only university program using this drug combination to treat the deadly disease.
“Everybody connected to my treatment was beyond phenomenal.” Patients were given the drug therapy for four cycles during the first part of the trial. Once in complete remission, the patient was placed on a maintenance drug to keep the cancer at bay. Unlike other treatments for mantle cell lymphoma, no steroids were administered.
Although the treatment was very aggressive and diffi`cult for Karen to tolerate, including a six-week stint in the hospital, the result was worth it.
“After that first round, they didn’t find any lymph nodes that were infected,” Karen says. With Dr. Lossos’ encouragement, she agreed to go back for the second round of treatment.
The 22 patients who completed the trial went into complete remission, with only three relapses.
“The disease is usually not curable. About 50 percent of patients relapse after 18 months,” Dr. Lossos explains. “In our study, 93 percent are without relapse at 18 months.”
Some of these patients are now without disease for more than five years. Karen, a mother of three and grandmother of five, is one of those success stories.
“He worried about me every single day, every hour. He was just wonderful,” Karen says of Dr. Lossos. “He has so much compassion for his patients.”
Dr. Lossos is now working on the second phase of the trial using the same protocol without the maintenance drug to determine if it’s responsible for preventing the cancer from returning.