Cancer survivors needed for study of lymph disorder to ease pain, swelling

Julie Karbo fights a battle every day to keep her lymphedema under control.

Every night she hooks her arm up to a portable pump to help drain away fluids. Every day she wears compression sleeves to keep the swelling down. She limits the number of groceries she carries into the house to make sure she doesn't put undue strain on the affected arm, and keeps a close watch for any possible infection-causing scratches or spider bites.

'A bee sting or a spider bite can lead to a very serious infection,' says Karbo, 49, a high-tech public relations executive and single mother of two in the Bay Area, who - unlike many lymphedema patients - never had cancer. 'It's something that greatly impacts the way you live your life.'

There is no cure yet for lymphedema, a chronic condition that affects 10 million people in the United States and 135 million worldwide. The disease causes swelling from an accumulation of fluid that can lead to serious infections and pain. Lymphedema can occur without cancer, but patients whose lymph nodes have been removed during cancer treatment are particularly susceptible to this condition.

In an ongoing effort to find a cure for this disorder, a team of researchers led by Stanley Rockson, MD, associate professor of cardiovascular medicine at the School of Medicine, will study the effectiveness of anti-inflammatory drugs on lymphedema patients. The goal is to eventually find a cure for people like Karbo who struggle every day to live with the discomfort of this often misdiagnosed and misunderstood disorder.

'We're searching for medical treatments as opposed to just physical treatments,' said Rockson, one of the leading experts on lymphatics. 'The physical treatments are like the iron lung for polio. They work, but this is certainly no way to live.'

For the new study, Rockson's team is looking for lymphedema patients, primarily breast cancer survivors, with swelling in the arm.

The new study is based on Rockson's earlier lymphedema research in mice. In a study published last year in the journal Public Library of Science-Medicine, his lab showed that the disorder is characterized not only by the presence of swelling, but by a profound accompanying inflammation.

In a follow-up study that has not yet been published, Rockson's lab found reversal of the abnormal findings in mice after regular treatment with an anti- inflammatory medication. 'The swelling went down,' Rockson said. 'And when we looked at the molecular patterns in the mice, they had normalized. The tissues became structurally normal.'

Rockson received a small grant from Stanford's Office of Technology and Licensing for a pilot study of 30 to 50 people to study the effects of a daily oral anti-inflammatory treatment over a three-month period in breast cancer survivors with lymphedema. Researchers hope to see the same results in humans that they saw in the mice.

'We'll be looking for a reduction in swelling of the limb,' Rockson said, 'but also evidence of normalization of the tissue architecture and molecular analysis. If we can prove that anti-inflammatories normalize the molecular fingerprint, then treatment would alleviate the long-term complications of lymphedema.'

Lymphedema complications include thickening and scarring that decreases skin elasticity and increases the weight of the limb beyond the weight gain from swelling. Joints also become less flexible, limiting the mobility of many of these patients as they age.

In his ongoing search for a cure for lymphedema, Rockson has promoted a focus on this disease and a better understanding of the critical role of the lymphatic system in cancer, infection, inflammation and other human diseases.

'Lymphatic biology may be one of the missing links to a lot of the unsolved mysteries of human diseases, like cancer or AIDS,' Rockson said. 'A better understanding of lymphatics may unlock some of those mysteries.'

Most medical schools don't teach the lymphatic system at all. A national survey conducted by Rockson showed that the average time spent on teaching the lymphatic system during a four-year medical education is 15 minutes.

Rockson has been active in introducing lymphatic education to the medical students, residents and cardiology fellows at Stanford. The Center for Lymphatic and Venous Disorders was established in 1995 at Stanford Hospital, where he evaluates 300 patients each year. He also serves as editor-in-chief of the journal Lymphatic Research and Biology, and chairs the scientific advisory board for the Lymphatic Research Foundation, a nonprofit that raises funds for lymphedema.

For information on volunteering for this study, call 725-7571.