By Jan Jarvis
Star-Telegram Staff Writer
Posted on Thu, Feb. 10, 2005
ARLINGTON - After his cancer diagnosis in 1994, Peter Tischler turned to a support group for help dealing with the disease.
"But most of the people there had solid tumors and a chance for a cure," he said. "I didn't relate real well."
There is no cure for the cancer Tischler has, multiple myeloma, which attacks bone marrow. Tischler longed to talk to survivors who could tell him what to expect.
"I could get plenty of medical information off the Internet, but what I couldn't get was information about how it felt to have myeloma," he said.
Out of frustration, the Arlington resident founded the North Texas Myeloma Support Group in 1996 for patients, caregivers and family members. It now attracts people from across the state and Oklahoma. The group gives people a place to learn about research and the disease, which can cause pain and fractures.
"Newcomers are usually scared to death because there is no cure," Tischler said. "When I was diagnosed, I expected to be dead after three to five years."
Tischler and his wife, Lucy, started the group after they attended an International Myeloma Foundation seminar in California. At the meeting, they expected to see a roomful of people in terrible condition, Lucy Tischler said.
"Instead, we saw all these people who were healthy-looking and enjoying life," she said.
Susie Novis, executive director of the International Myeloma Foundation, founded the organization in 1990 with her husband, Brian, who later died from the disease, and one of his doctors.
"In the early days, myeloma was not on the radar, so people who were diagnosed with it had never heard of it," she said. "Today, myeloma is a little better-known, but people still need to be educated about it."
The biggest challenge is reaching out to people who may not realize that their symptoms, which include exhaustion, could be signs of the disease, Novis said. The disease typically afflicts the elderly, but it has been diagnosed in people under 45 who tend to attribute their pain to overworked muscles or a back injury.
Since his diagnosis, Peter Tischler has learned much about coping with the disease. After six months of chemotherapy, the disease reached a plateau. Three years later, blood tests showed that the cancer was not under control, and he underwent chemotherapy again. He has not needed treatments since.
"Some days it is hard to think of myself as having cancer because I live my life like I would if I didn't have myeloma," said Tischler, who is retired from IBM.
But it is hard to escape the reality of the disease. Since the support group was founded, 94 of its members have died.
New treatments are showing promise, said Dr. Marvin Stone, chief of oncology at Baylor University Medical Center in Dallas.
High-dose chemotherapy and stem-cell transplants have improved survival rates. Thalidomide, which caused disabilities in babies during the 1950s, has also prolonged some patients' lives.
Although the Food and Drug Administration has not approved thalidomide for the treatment of myeloma, studies show that about one-third of the people who failed standard chemotherapy responded to it, Stone said.
With new treatments comes hope that eventually the cancer will be curable, Tischler said.
"Ten years ago, there were only two or three drugs to treat this," he said. "Now there's a whole armament."
IN THE KNOW
If you go
• International Myeloma Foundation, Dallas Patient & Family Seminar
• Friday and Saturday
• Fairmont Hotel, 1717 N. Akard St., Dallas
• One day for $75 or two days for $125
• For registration and information, call (800) 452-2873, ext. 226, or go to www.myeloma.org.
What is myeloma?
Multiple myeloma is a cancer of plasma cells, the antibody-producing cells normally found in bone marrow.
• There will be about 15,980 new cases in the United States this year.
• About 11,300 Americans are expected to die of multiple myeloma this year.
• The disease can cause fatigue, weakness, bone pain, fractures and susceptibility to infection.
• Geraldine Ferraro, a former vice presidential candidate, was diagnosed with multiple myeloma in 1998.
• The North Texas Myeloma Support Group meets from 10 a.m. to 1 p.m. on the second Saturday of each month at Baylor University Medical Center in Dallas. For more information, call Peter Tischler at (817) 466-3822 or go to northtexas.myeloma.org.
SOURCES: American Cancer Society, International Myeloma Foundation, Multiple Myeloma Research Foundation