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Local Advocates Enlighten Legislators On Need To Address Brain Tumor Issues

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Stan and Karen Perrone of Newtown returned May 7 from Washington, DC, where they had spent two days advocating for the National Brain Tumor Society.

“Head To The Hill” was a gathering of more than 140 people from all over the country, said Ms Perrone, seeking to focus senators and representatives on three issues important to anyone impacted by the crisis of a brain tumor diagnosis.

First, said Ms Perrone, the group is seeking support for a $32 billion funding of research for the National Institute of Health, which funds the National Cancer Society. Second, the group is looking for support for the Cancer Treatment Parity Act. This act, she said, would allow cancer patients taking oral chemotherapy drugs to receive the same treatment by insurance companies as they would if taking the drugs via IV therapy. Currently, Ms Perrone said, oral drugs are considered medical treatment and are subject to a person’s insurance deductible and co-payments. IV chemotherapy is considered an office visit, and paid in full by most insurance companies. Because oral chemotherapy drugs can cost thousands of dollars a month, it is a financial stress on patients already dealing with the emotional and physical turmoil of cancer treatment.

The third point that advocates for the National Brain Tumor Society pressed with the senators and representatives was the reauthorization of the Carolyn Pryce Walker Conquer Childhood Cancer Act.

Advocates met with senators and representatives from their respective states, said Mr Perrone. “We found them to be very cordial meetings that contributed to our getting the point across,” he said. “All seemed well-prepared [to meet with us], and were good listeners.”

The Perrones have a very personal reason for joining the efforts to move forward support for cancer research, particularly that of brain tumors.

In October 2012, Mr Perrone received a diagnosis of a brain tumor known as a glioblastoma. The tumor, somewhat larger than a golf ball, was growing in the right temporal lobe of his brain. It is only through hindsight, said the Perrones, that they realized there had been subtle symptoms occurring for many months.

Mr Perrone, owner of Kesco Electric & Home Improvement, has always been active. Nearly daily workouts plus the physical nature of his work meant that he was, he thought, in very good health. He has watched his diet, turning to a plant-based diet recently, in the belief that it is a healthier way to live.

“He’s never been a complainer,” said Ms Perrone. That is why, when on that October morning her husband arose complaining of a massive headache and returned to bed, she was concerned. That concern rose to alarm when she returned from her daily walk to find him pacing the room and holding his head.

“I felt like my head was going to explode,” recalled Mr Perrone.

The Newtown Ambulance responded swiftly to her call, reassured Mr Perrone, and settled him into the ambulance for the ride to Danbury Hospital. Doctors there scheduled a CAT Scan.

“The doctor came back after reviewing the scan, and I could sense it was grave,” said Ms Perrone, “when he sat down and told me to sit down.”

More than a year and a half later, the tears still come to her eyes as she recalls hearing the doctor’s words: “We found a mass.”

Surgery followed within days, and while the mass was removed as completely as possible, it was determined that it was a malignant glioblastoma.

“The problem with brain tumors is that the roots of those cancer cells extend deep into the brain. Surgeons don’t want the surgery to disrupt the healthy brain cells, so it is hard sometimes to know that all of the cancer has been removed,” Ms Perrone explained.

The Perrones have great praise for their surgeon, Dr Scott Sanderson. “He was wonderful,” Mr Perrone said, thoroughly explaining the surgery and options, and calming him.

Mr Perrone did have a minor stroke during the surgery, which they found was not uncommon in this type of surgery, but which has left him with a slight weakness in one arm. Of much more concern to them, said Ms Perrone, was the surgeon’s explanation that glioblastoma is considered a fatal cancer.

“It comes back, he told us, and when it comes back, it is with a vengeance,” Ms Perrone said. The typical life expectancy, the doctor said, is one to one-and-a-half years. A neuro-oncologist later told them that three- to five-year life expectancy was not out of the question.

Mr Perrone opted to follow the protocol of surgery, then six weeks of chemotherapy and radiation. His mode of chemotherapy was an oral tablet — and that is when they realized the financial burden. The oral therapy is gentler on the system, and just as effective, Mr Perrone said.

 But the $1,700 cost of the Temodar pills, the drug of choice for Mr Perrone’s treatment, was money completely out of the couple’s pocketbook when 2012 turned into 2013, and their responsibility for an annual insurance deductible kicked in all over again. This, Ms Perrone said, is where the Cancer Treatment Parity Act would benefit others in their situation.

“I want to see change on the federal level for this drug to be covered the same as when administered by IV,” Ms Perrone said. Furthermore, she said, 25 percent of the research currently being proposed for new cancer drugs is that of a drug in pill form. “So this has to be addressed,” she stressed.

“If I had gone into the hospital, had a port put into me, and had the same drug administered by IV, it would have been covered by our insurance,” said Mr Perrone, and added that he believes it is actually less costly for insurance companies if a patient downs a pill at home, rather than have treatment in a hospital setting.

Mr Perrone has had no return of his cancer since completing treatment. “That’s a good sign. I’m in remission right now,” he said. Life has changed for him, though. The weakness and mild dizziness that resulted from the stroke and radiation treatments have left him unable to actively work, and his vision has been affected to the point that he no longer drives. He now oversees his staff and takes care of the paper end of the business, rather than getting into the thick of the work. His days of testing and stringing the lights for the Ram Pasture Christmas tree, as he did for many years, are most likely behind him.

He has some short-term memory problems, as well, resulting from the tumor surgery and treatment. At this time, though, he feels fortunate to be alive, he said.

 

Widespread Impact

According to information at BrainTumor.org, more than 688,000 people in the United States are now diagnosed with a primary brain or central nervous system tumor; 138,000 of them are malignant.

It is estimated that 690 Connecticut citizens will receive a diagnosis of this type in 2014, 280 of which will be malignant. In 2013, 162 people in Connecticut died from brain or nervous system tumors.

“Overall, there is a 34 percent survival rate with a diagnosis of brain tumor. For a glioblastoma, the five-year survival rate is 4.7 percent,” Ms Perrone said. Brain tumors are the leading cause of cancer death for children under the age of 10, and for children under the age of 20, it is the number two cause of cancer death, she said.

“Only four new therapies have been approved in the last 20 years for brain tumors. That is ridiculous in this day and age,” Ms Perrone fumed. Increased funding for cancer research would mean new therapies are researched and trial studies undertaken.

There are currently no screening tests for brain tumors, as there are for breast or lung cancer, Mr Perrone said. Some brain tumors are very slow growing, and others grow quickly. Symptoms are rare, and can be few and far between, or come on suddenly. Any unusually severe headache, he warned, is reason to contact medical help immediately. His wife’s quick action in getting him to the hospital by ambulance most likely prevented Mr Perrone from severe brain damage, his doctor said, and possibly saved his life. In hindsight, the Perrones recognize that Mr Perrone experienced changes in speech patterns and actions, as well as experiencing what he thought was a lingering sinus infection or inner ear irritation.

There truly is light within a dark cloud, though, Mr Perrone believes. The disease has solidified his faith and spirituality, he said.

“With this illness, I saw what a huge amount of family and friends and town support there is. There is so much goodwill, and that’s what I fed on,” he said.

He has added alternative therapies to his physical workouts with the LiveStrong YMCA program in Wilton. Meditation, massage, and nutritional supplements have improved his physical well-being, Mr Perrone said, and he nurtures a positive attitude.

“I went to Washington, DC, as a way to give back,” said Mr Perrone, and came away feeling it had been a successful undertaking.

Public support is still needed, however, the Perrones emphasized. “Write to your senators and representatives, and ask them to support these issues,” Ms Perrone said. Be informed. Visit www.BrainTumor.org for up to date information, and to donate.

The Perrones and their team “Stand Up For Stan” will take part in the May 31–June 1 Relay For Life at Newtown High School Blue & Gold Stadium. “We’ll be wearing orange bracelets in support of the National Brain Tumor Society, and all donations to our team,” she said, “will go to the American Cancer Society.”

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