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Kennedy's cancer puts focus on quality of life

Wednesday, August 26, 2009 | 3:36 p.m. CDT; updated 4:21 p.m. CDT, Wednesday, August 26, 2009

He lived 15 months with an incurable brain tumor, a little longer than usual for a patient in his late 70s. Perhaps equally important is that Sen. Edward M. Kennedy lived those months well — able to work almost to the end, to sail the choppy New England waters he adored, to help elect a president he supported, and even to give him a dog.

Time is important to any cancer patient. Quality of life, not just how much life they can squeeze out, is increasingly the focus for people with a terminal illness, cancer specialists say. It also is one of the chief goals of treatments for brain tumors, since these therapies typically do not buy much time.

"The advances that we've made in prolonging survival aren't as big as we've liked them to be, but people have stayed at a good quality of life right up to the end," said Dr. Matthew Ewend, neurosurgery chief at the University of North Carolina at Chapel Hill.

Even after treatments can no longer control tumor growth for patients, "we can usually keep their quality of life pretty good with medicines for brain swelling, and then the end is usually pretty graceful," Ewend said.

There is much to be admired in how Kennedy spent his final months, said Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society.

"This is a man who had a serious and fatal illness and he knew that. Despite his illness, he carried on as best he could," Lichtenfeld said.

He noted that celebrities "are public representatives of millions of people who deal with these issues on a daily basis." When one gets recommended treatments and is able to live life to its fullest, it gives hope to other patients, Lichtenfeld said.

Kennedy was diagnosed with a malignant glioma, a cancerous brain tumor, after suffering a seizure at his home in May 2008. He had surgery two weeks later, followed by chemotherapy with the drug Temodar during and after radiation, his family has said.

Cancer specialists say he also likely received Avastin, a newer drug aimed at depriving the tumor of its blood supply. Avastin recently won federal approval for treating brain tumors that recur after standard treatment. It is made by Genentech, which recently was acquired by Swiss-based Roche.

Kennedy's doctors have declined to comment on specifics and did not respond to interview requests Wednesday.

Median survival for the type of tumor Kennedy is believed to have had is 12 to 15 months, but the range is wide, said Dr. Mark Gilbert, a brain tumor expert at the University of Texas M.D. Anderson Cancer Center in Houston.

Gilbert is leading an international study of 1,200 patients testing intensive Temodar therapy to see if that can improve survival. Results are expected next year. Temodar is made by Schering-Plough Corp.

"Treatments are keeping the cancer under control for a longer time," Gilbert said. Without the tumor continuing to grow, patients "maintain their function and with that, their quality of life," he said.

Even though survival time remains grim, it has improved, said Dr. Steve Brem, neurosurgery chief at Moffitt Cancer Center in Tampa, Fla.

"Only a few years ago, it used to be about nine months," Brem said. Gliomas are so invasive — spreading tentacles into the brain in a way that all cannot be removed with surgery — that they usually cannot be cured, he explained.

Treatments besides Temodar that might improve the odds are in testing now: several experimental drugs, an experimental vaccine that prods the immune system to fight the cancer, and a radioactive "homing device" that helps a cancer drug reach tumors deep in the brain.

However, much more research is needed to make meaningful gains, said a statement from the International Brain Tumour Alliance, a British-based international support and advocacy group.

Each year 200,000 people worldwide develop a malignant brain tumor "and there has been only a minimal improvement in new therapies in the past 30 years," the statement said.

Cancer research is a cause Kennedy championed long before his illness, the cancer society's chief executive, John Seffrin, said in a statement.

Kennedy helped overhaul the 1971 National Cancer Act, "rein in the tobacco industry" with a bill giving the federal Food and Drug Administration authority to regulate tobacco products, and backed expansion of the Children's Health Insurance Program with an increase in the tobacco tax, the statement said.

For these and other achievements, he was given the Society's Medal of Honor and National Distinguished Advocacy Award.


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