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Patient Profile: ED EPSTEIN The Value of Clinical Trials By Jo Cavallo Even though Ed Epstein, 71, had spent his professional career in the healthcare industry, he never expected that he would help pioneer medical research in a disease that until 1999 he had never heard of: follicular lymphoma. Although Epstein had been experiencing night sweats and fatigue, two telltale signs of the disease, it was the development of two large bumps on his head that sent him to his doctor for a checkup. A biopsy of the excised tumors revealed stage 4 follicular lymphoma. "I was shocked," says Epstein. "When someone tells you that you have cancer and you don’t know what the long-term prognosis is going to be, it's frightening. I figured this was it." Although his doctor initially advised a watch-and-wait approach, Epstein did a search on the Internet about follicular lymphoma treatment and found a vaccine clinical trial the National Cancer Institute was sponsoring. "This was in the spring of 2000 and it was the first vaccine study being done in the U.S.," says Epstein. When the tumors on his head started growing back, Epstein decided to enroll in the study. The study was so new he was among only three other patients enrolled. "Having been in the medical field I knew that clinical trials often offer better treatment than the standard treatment and I knew that I would be getting a regimen of the standard chemotherapy—PACE (prednisone, doxorubicin, cyclophosphamide and eptoposide)—as part of the trial. I thought if I could get a complete remission with the chemotherapy, even if I didn’t get the vaccine, I would get everything else that would, hopefully, put me in good stead," says Epstein. The treatment put Epstein in a complete remission. "I could literally feel those tumors shrinking on my head," he says. When a lymph node was found on his left kidney in 2003, Epstein was treated with Rituxan (rituximab), but when it failed to stop disease progression, he was given Zevalin (Y90 ibritumomab tiuxetan), a radioimmunotherapy drug, FDA approved just the year before, which has halted disease progression. But even if his lymphoma returns, Epstein is confident that it can be successfully treated again. "I was lucky to be diagnosed when I was because there were all these new treatments available. I feel optimistic that for me, and for other NHL patients as well, lymphoma will be treated as a chronic disease and if my follicular lymphoma comes back, there will be other new drugs for me." Do you want to help eradicate lymphoma? |