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Brain cancer patients fight an unseen enemy Advice and updated information offered at recent area conference


Al Musella's Comments: (This is his personal views and are not necessarily the views of the Musella Foundation!)



Website: http://ems.gmnews.com/news/2005/1019/Front_Page/005.html

Posted on: 10/19/2005

Brain cancer patients fight an unseen enemy Advice and updated information offered at recent area conference

BY JAY BODAS

Staff Writer

JAY BODAS Dave and Penny Bowman traveled all the way from New Zealand to attend the Central New Jersey Regional Brain Tumor Conference held across from JFK Medical Center in Edison last Saturday. Dave is currently in treatment for glioblastoma multiforme, which is the deadliest and most common type of brain cancer

Stanley Shrodo lost his son, Matthew, to a brain tumor just a few months after Matthew’s college graduation.

Since then, Shrodo has made it his goal to help others facing the same struggle. A conference on brain cancer held across from JFK Medical Center, Edison, on Saturday is just one example of his efforts.

“I lost my son, Matthew, to a brain tumor in 1994 when he was 25 years old,” Shrodo said. “He had a grade three brain tumor, four being the most severe, and was diagnosed in December 1991. At that time he was told he had eight months to a year to live.

Matthew had just graduated from Syracuse University as an environmental engineer that previous May. His inoperable tumor was growing near his brainstem. He passed away from it after fighting it for 28 months.

He may have died from it, but he kept fighting to the end and didn’t give up,” he said.

Almost 20 speakers spoke to an audience of more than 160 conference participants at last weekend’s Central New Jersey Regional Brain Tumor Conference. The event was sponsored by the Brain Tumor Society, the Musella Foundation, and two area brain tumor support groups.

The day’s conversation also included more day-to-day concerns such as the importance of finding the right doctor, getting a second opinion, and knowing how the medical system works.

“Not all cancer centers offer the same treatment, and you have to remember that it is all actually a business, not a charity,” said Dennis Roth, chair of the Brain Tumor Society. He also lost a son to brain cancer.

“It is important to plan your moves in finding doctors and getting second opinions, and probably the most inspiring thing to me is finding long-term survivors,” he said. “Most used conventional and long-term therapies to live a long time.”

Those in attendance came from all over the Northeast and beyond.

“People have come from Ohio, Massachusetts, and New York, to name but a few states,” Shrodo said. “Most of them are brain tumor survivors and family members, along with social workers, nurses, and doctors. One couple even came from New Zealand.”

That couple was Dave and Penny Bowman, who had just arrived in the United States two days before the conference.

Dave Bowman, 36, is fighting a serious brain tumor called glioblastoma multiforme. Glioblastoma is the most common and deadliest type of brain cancer, and patients generally have an average life expectancy of one year from the point of diagnosis. Bowman was diagnosed in January after he suffered multiple seizures.

“On Jan. 6, I got knocked off my feet by a grand mal seizure which paralyzed me on the right side,” said Bowman, a 14-year veteran police officer. “I literally thought I either had a stroke or had somehow been electrocuted since I was helping a friend do renovation work on the side of a building. I could remember it getting blacker and blacker and actually lost consciousness for a minute. I thought I was dying and that my two boys were too young to lose their father.”

After suffering a second similar episode a few days later, Bowman had CT and MRI scans done of his brain, which showed that a serious lesion was present.

“I told the doctors that we would not be leaving until he had a CT scan done,” wife Penny Bowman said. “Six hours later he had a scan, which showed a lesion, and he was admitted to the neurology ward. The next day the MRI scan confirmed that it was a significant lesion, and it looked as if surgical removal was the only option.”

Dave Bowman underwent surgery soon afterward, but he had to wait more than a week for the pathology results on the tumor.

“They found that it was the most malignant and aggressive type of tumor there is,” Bowman said. “Even despite the surgery, I was given a five to 10 percent chance of living the next 12 months. I was told if there were certain things that I really wanted to do in my life, that I should do them now. Later, I went to see an oncologist who was more positive; though he still told me there was very little chance of me living two years.”

After he recovered from the initial shock, Bowman set out to learn more about his condition. From a friend in Canada, who is a nurse, he learned of an orally administered anti-cancer drug called temozolomide, often marketed under the brand name Temodar in the United States, that had been used successfully.

Coincidentally in March of this year that the New England Journal of Medicine published results showing that the drug represented the most important advancement in the management of glioblastoma since radiation therapy was shown to be of benefit 35 years ago, according to study co-author Dr. Warren Mason.

The study found that 26 percent of those who received combination temozolomide-radiation treatment were still living after two years, whereas only 10 percent of those treated with only radiation survived that long.

“I challenged my oncologist on it,” Bowman said. “He ended up telling me that the reason he did not tell his patients about the medication was because there was such a high cost for the drug regimen with no sure prognosis, he did not want to give his patients false hope. I bluntly replied that it was not his job to decide what was the cost but to simply give me the best advice possible, at which point he fell silent.”

Bowman found out that the drug was not subsidized in New Zealand under the public health care system. Unlike the United States, the country has a parallel system of public and private health services.

The New Zealand government subsidizes public health care, whereas the individual must pay for private health care.

“In order to prevent a class of haves versus have-nots, the range of treatment options in New Zealand is often limited as compared to what is available in other countries,” Dave Bowman said. “The health care philosophy is that everyone should have access to an equal standard of care. While this is certainly well-intentioned, what this unfortunately means is that even someone who is able to pay for treatment may not be able to get access to it if it is so expensive that those with less money would not be able to afford it. In other words, it ends up lowering the overall standard of care for everyone.”

Bowman’s current treatment regimen costs $6,500 for each set of five days, and he is about to start the seventh round.

“We met with the New Zealand health minister on the fourth of July to get temozolomide on the government’s list of drugs that would be covered. They determined that they would formally consider the issue in November, but even if it were approved at that meeting, it still would not be until early next year that the drug would be funded,” he said.

So far the couple has spent around $45,000 for drug and radiation therapy. They have raised nearly $100,000 for Bowman’s treatment through donations from their local community, including $15,000 from his local police association.

The couple appeared on a morning television show on Aug. 1 that was broadcast nationwide in New Zealand to increase awareness of Bowman’s condition, as well as brain cancer in general.

“I want to put pressure on the New Zealand government as well as do more for brain tumor patients in general,” Dave Bowman said. “Almost immediately after that appearance, we heard from a woman who said her brother was suffering from brain cancer but was told he could not be offered anything, and she wanted to learn more about temozolomide.”

This week the couple will continue on to North Carolina, where they will see Dr. Henry Friedman, co-director of Duke University’s Brain Tumor Center, which cares for more than 2,000 brain tumor patients worldwide.

The Bowmans first learned of Friedman and his work after they saw a television segment detailing his work on the news show “60 Minutes.” A two-man crew is following the couple wherever they go, as they are also filming their own documentary on Dave’s fight for New Zealand’s Television Three, a nationwide television network.

Dave Bowman’s condition appears to have been stabilized, for now.

“He has had three stable MRI scans, and the goal of the drug is to keep the tumor from coming back,” his wife Penny said. “He still has seizures on the right side of his body, but they used to be more severe, as the medication appears to be controlling them.”

After a brief pause, she offered one last thought.

“But regardless of what happens, my husband’s driving force is that he wants his children to know that he did everything in the world he possibly could do to survive.”

For more information on the Central NJ Brain Tumor Support Group and Resource Center, call Stan or Virginia Shrodo at (908) 685-0917 or send e-mail to info@njbt.org. For more information on Dave Bowman and his condition, visit www.headstart.org.nz.



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