For at least two local men living with prostate cancer, surviving the common but deadly disease means actively contributing to its medical advances.
The men, Jim Waldenfels and Alvin Chin, recently participated in a research panel that looked for the best way to spend Congress’ $80 million appropriation for prostate cancer research this year.
The panel, part of the Department of Defense Congressionally Directed Medical Research Programs (CDMRP), looks for research proposals that are high risk, but more importantly, bring big gains. That usually means that proposals rejected by other government medical funding sources, such as the National Institutes of Health, would have a chance of survival under the CDMRP.
"We really have a chance to make a difference for the disease, for ourselves and for fellow survivors," said Waldenfels, an Annandale resident who attends church in Burke. "So we’re really motivated … we’re helping to save our own lives."
Inova Fairfax Prostate Cancer Support Group nominated Chin, Waldenfels and two other Fairfax County men, Bill Bright and Ray Walsh. Fifty-four consumer reviewers participate CDMRP’s panels that look at proposals for prostate cancer, breast cancer, ovarian cancer, neurofibromatosis and autism.
The three-member panels include two scientists or doctors and one consumer, or patient. The consumer reviewers bring first-hand knowledge to the table about what’s working or lacking in the medical field of their diseases. Both Waldenfels and Chin said the scientists are very receptive to their thoughts and opinions.
"Consumer reviewers bring the voice of urgency as research looks towards cures in these diseases," said Gail Whitehead, spokesperson for CDMRP. "They represent the people [the scientists and doctors] ultimately hope to help. They see them as current experts, as survivors of the disease."
The panels met in Reston for three days, between July 8-13, to discuss hundreds of proposals. Each three-member panel looked at roughly 45 proposals, which they had previous access to in order to prepare for the discussions. Then panelists provided input and everyone voted on which proposals to send through to the next step: the programmatic review.
"It’s an important process," said Chin, a Burke resident. "We only have a certain amount of money and we want to make sure only the best research gets done."
The best proposals for CDMRP are not the same as the National Institutes of Health’s picks, though, according to Chin and Waldenfels. Since the CDMRP looks for research that has the potential to make extraordinary breakthroughs in medicine and science, the panels are only looking for the research that’s especially innovative, non-mainstream and produces a high reward, Waldenfels said. "They’re kind of swinging for the fences."
"We focus on [innovative proposals] because there are other federal agencies more concerned with doing basic research," said Whitehead. "We look at what would put us in position to leap frog to a new level … those proposals would get overlooked in more conservative agencies."
WALDENFELS IS optimistic about innovative proposals because innovative therapy has helped him defy the odds. When doctors diagnosed him with a very late-stage prostate cancer in 1999, they said the cancer would take about five years to kill him. He did his research, and decided he wanted to try something called intermittent hormone blockade therapy, since radiation would not have been effective during such a late stage of the disease. Eight years later, he said he feels better than ever.
"My cancer is under excellent control," Waldenfels said. "My quality of life is wonderful."
He experiences side effects, though, so the therapy is not for everyone. In addition to extremely low testosterone levels, some patients suffer from anemia, hot flashes, lowered or nonexistent libidos and bone density loss. Waldenfels stays on top of his side effects by doing weight-bearing exercises and taking calcium and vitamin D supplements for the bone density loss.
Waldenfels would like to see more research done for late-stage patients. Prostate-Specific Antigen tests, or PSA tests, are indicators of the cancer’s progression in a patient. However, Waldenfels said that while PSA tests are great for prevention and early stage patients, the test is "not a good marker for late-stage patients."
Doctors diagnosed Chin’s cancer in a much earlier stage than Waldenfels', so Chin took the radiation therapy route by choosing Brachytherapy — in which doctors treat patients with radiation through the insertion of radioactive seeds, he said.
Chin said he would like to see money spent on immunization research, because "there’s some pretty good promise there."
Both Chin and Waldenfels had relatives with prostate cancer, and said prevention is extremely important. Waldenfels’ grandfather and father both died from the disease, while Chin’s uncles had it. Chin said young men with a history of the disease in their families should start taking PSA tests around the age of 40 in order to stay on top of their health.
"With PSA tests, you can get an early diagnosis," Chin said.
"The key thing is prevention," said Waldenfels. "A lot of men have their heads in the sand."