From
BMT Newsletter
May 1996
Issue # 35 - Donor Leukocyte Infusions
Reprinted by NYSERNet with Permission from BMT Newsletter
In April 1987, Laurel Simmons was preparing to have her wisdom teeth removed and went through a few "routine" tests prior to the procedure. One of the tests revealed a slightly elevated white blood cell count. Her physician told her that the higher than normal white cell level would ordinarily be attributed to some minor infection. "But for some reason, they said Letwith chronic myelogenous leukemia. "I had no hint anything was going on," she recalled. "The leukemia just came out of nowhere! I was completely asymptomatic." During the next few months, Simmons, who lives in Boston, relied on her friends to support her, help her research the subject of leukemia, and make arrangements for treatment. They helped her find a hematologist/oncologist she described as "wonderful." He recommended a BMT, and suggested she have it done at Fred Hutchinson Cancer Research Center in Seattle. One of her brothersserved as her bone marrow donor. "So we got on a Corporate Angel Network jet, flew to Vancouver, and drove on down to Seattle," Simmons remembered. She was admitted approximately five months after she was first diagnosed. Simmons, now 34, said of the BMT, "All transplants are hard. But I was young and healthy, and I knew I had a good prognosis for remission if I went through with it. So I knew I just had to go ahead and do it." She went through a couple of crises during her month in the hospital following the transplant, but the medical staff were prepared for every eventuality. She came through her BMT with flying colors, and was discharged the same day that the opera singer Josi Carreras, who underwent a bone marrow transplant for leukemia, was admitted.
Simmons, who works at the Artificial Intelligence Lab at MIT in Boston, returned to work part time in April 1988. She moved up to full time the following September, feeling she was fairly well out of the woods. But during a European vacation in the summer of 1990 she began to experience fatigue. She had a check-up as soon as she returned to Boston and found she had relapsed.
After considering the options - which included the possibility of a second bone marrow transplant - Simmons decided to try a new procedure called buffy coat infusion, also known as donor leukocyte infusion. She was part of a clinical trial, and was one of the first people in the United States to receive the treatment. "I just went ahead with it, even though it was a relatively unknown procedure," she said. "When your options are limited and your decisions are critical, I find you become very stalwart and very focused." In Simmons regimen of interferon, followed by four weekly infusions of white blood cells from her bone marrow donor. She said the infusion process was simple, it required no additional radiation or chemotherapy and, best of all, it did not close off any of her other options if it failed. "I was treated in October 1991 and was in complete remission by December," Simmons said. She did, however, develop chronic GVHD.
"I found that the rigors of long-term GVHD and the medications I took to treat it were difficult to endure - especially psychologically. I wished afterward I had been better prepared to deal with them." Simmons waited out the GVHD, and finally went off all medication for it in December 1995. Her leukemia has remained in remission.
In June 1994, Simmons started an information exchange on the World Wide Web called BMT-Talk. "I think a lot of people who have something bad happen to them want to do something good about it," she explained. She said she could find virtually nothing on the Internet geared to people who needed information about BMTs. "I got to thinking how inefficient it is, the way you learn everything there is to know about something like a BMT after youlet people get information ahead of time."So I just started it at my desk one morning," she said. BMT-Talk currently has about 500 subscribers, and Simmons screens every message that comes in before posting it. "Itresult is a wonderful list," she said. While a few MDs have sent information, the majority of messages come from people who want to share ideas and let others know what they have learned from their own experiences.
For those with access to the World Wide Web, the address for BMT-Talk is: http://www.ai.mit.edu/people/laurel/Bmt-talk/bmt-talk.html. The Internet address for BMT Blood and Marrow Transplant Newsletter is: help@bmtnews.org
The electronic version of this document was created by NYSERNet, Inc. as part of the Breast Cancer Information Clearinghouse