Glioblastoma, the brain tumor that killed Senator Ted Kennedy, still mostly untreatable, say docs Read more: http://www.nydailynews.com/lifestyle/hea

Tuesday, September 1st 2009, 11:00 AM

Ted Kennedy waged a battle against one of the most lethal of all brain tumors -- and at first, as the Massachusetts senator kept active seeing friends and going on his beloved sailboat, he almost seemed to have the upper hand.

But despite his access to the best medical treatment available, Kennedy lost the fight of his life just 15 months after his diagnosis.

Kennedy and others unlucky enough to learn they have glioblastoma receive a grim prognosis: about a year or a little more is the average life expectancy.

The outlook hasn’t changed all that much in the last 40 years, according to Dr. Eugene S. Flamm, chairman of neurosurgery at Montefiore Medical Center.

“It is a rapidly growing tumor that does not respond to treatment,” he says. “Even if you remove it surgically, the outcome is the same. The transformation of normal brain cells into tumor cells continues even after surgery.”

Despite the gloomy outlook, some doctors are more optimistic.

“It depends how you measure success,” says Dr. Alan Hirschfeld, chairman of neurosurgery at St. Vincent’s Hospital Manhattan. “If you measure it by extending life for two or three months, it’s successful. If you measure it in terms of curing the patient, no, we haven’t succeeded.”

“Survival time has increased very definitely,” says Dr. Michael Gruber, an oncologist at NYU Langone Medical Center. “How well a patient does depends on four indicators. Age is one. If you are over 50, your prognosis is worse than someone who is under 50. It also depends on the grade of tumor, whether it can be taken out, and a patient’s neurological status.”

In 2005, a drug called temozolomide was added to radiation therapy as the treatment for this type of tumor, and the median survival time was 14.6 months, according to the New York Times. Temozoliomide, which is taken orally and has fewer side effect than older drugs that were given intravenously, is now the go-to drug for treating glioblastoma.

Unfortunately, this rapidly growing tumor is virtually impossible to completely remove, says Hirschfeld.

“Although you can see something that looks very well defined on the MRI, the tumor extends well beyond those borders,” he says. “Even if you get 99.9 percent of it, you could still be left with 10 million cells that can grow and cause a recurrence.”

The cost of treating such a brain tumor is high -- from $100,000 to $500,000 is the figure experts at various medical centers tossed out, according to the New York Times.

When Kennedy was undergoing treatment, his own doctors couldn’t agree on whether he should have surgery, the Times reported. The senator flew to Duke for a three-plus hours operation in June that his doctors billed as “successful." But he lived just a few months longer.

Though there are no known risk factors for this type of tumor, it seems to strike people between the ages of 50 and 70 the most frequently, says Hirschfeld. It’s about equally common in men and women.

While new findings continue to extend the lives of patients with glioblastoma, for the moment, it remains one of the most dreaded diagnoses. For those who receive it, putting up a fight against the tumor may help.

“If you go to the Internet and do a search on outcomes in glioma, everyone will call it a terminal illness,” Dr. Henry Friedman, co-director of Duke’s brain tumor center, told the Times. “Your outcome is ‘dead on diagnosis.’ If you don’t have the philosophy that you can win, you have lost before you started.”

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Fox Valley Brain Tumor Coalition - Journey of Hope Walk

The Journey of Hope is our major fundraiser of the year, allowing us to raise most of the funds that we need to survive. This event is critical to the success of this group, so we hope you can join us!

With over 750 walkers, the Fox Valley Brain Tumor Coalition puts on a great party the Saturday after Labor Day every year. The non-competitive walk is held on the grounds of NeuroSpine Center of Wisconsin. Our paved ½ mile trail is short enough for nearly everyone to make at least one lap around, and is accessible to wheelchairs! For those who like more of a challenge, we encourage as many laps as you are able to do!

The day is a celebration of those fighting brain tumors and remembering those who have lost their battle. The walk starts with a ceremony at the Tree of Hope, with testimonials from those most affected by this disease, as well as a dedication from neurosurgeon Thomas Wascher MD, one of our biggest supporters.

Once you have built up your appetite from the walk, come in to our party tent for a great home-cooked picnic. We have fresh roasted corn-on-the-cob, hamburgers, hot dogs, chips and sweets! Vegetarian selections are available for those with restricted diets.

A huge silent auction, kids games, music, pictures and more makes this party fun for everyone!

As always, dogs are welcome, but should always be on a leash…we will provide water for our four legged friends!

Your registration cost of $10 (yes still only $10 after all these years!!!) includes a great t-shirt with all of our corporate sponsors proudly displayed, lunch and all the fun you can handle!

New this year is our online registration and personal web page, making it easier for your family and friends to support your efforts.

My Team