June 26, 2008

Brain Cancer Patient Finds a New (proton) Beam of Hope

By Carolyn Susman
Saturday, July 05, 2008

The word "if," as Rudyard Kipling showed us in his poem of that name, is powerful and pivotal. If Vince Baldino hadn't contracted a bad cold and sinus infection.

If he hadn't had a nasty reaction to steroid and antibiotic medication for that infection.

If he hadn't been unable to breathe, putting him in Martin Memorial Hospital where he got a CT scan which led to an MRI.

He might not have found out, for who knows how long, that he had three brain tumors sitting silently in his head.

His only clue had been a bout of double vision five years before this stunning discovery last year, but he was told he just needed reading glasses.

Baldino, 34, who lives in Stuart and works as a chef at the family restaurant, Baldino's in Tequesta, now had a fighting chance to overcome these tumors.

He underwent two surgeries last year at the University of Miami Medical Center.

The first surgery resulted in complications.

"One tumor was near his spinal sac," says his 36-year-old wife, Mary Ellen, stifling a sob.

"It put a tear in his spinal sac. He came down with spinal meningitis. He ended up recovering."

A second surgery was successful in removing more of the tumor growth.

"All the tumor had been removed except for pieces that were so microscopic the doctor couldn't get it," she says.

That's when the couple was referred for a form of radiation treatment that few have heard of: proton therapy.

The proton beam more precisely targets tumors than conventional radiation, doctors say, and it minimizes damage to healthy cells by delivering the radiation dose right to the tumor site.

Such precise targeting allows better control in sensitive areas where tumors might grow, such as the brain, eye, lung or prostate.

"We were referred to Boston. (Massachusetts General Hospital has a proton therapy center. That's where Sen. Ted Kennedy will do the follow-up treatment for his brain cancer. It hasn't been disclosed whether he will get proton therapy, but guidelines call for conventional radiation for the type of tumor he has.)

"They didn't want to see him until six weeks after his surgery," Mary Ellen says of her husband.

"They said the treatment would be eight weeks of proton therapy twice a day. Being away from our (two) kids from November through January..."

She trails off.

"I just thought, I'm gonna go online and research it. I Googled 'proton therapy.' That's when I found Jacksonville."

She found the only proton therapy center in the southeastern United States - there are only five nationwide - The University of Florida Proton Therapy Institute, affiliated with the UF College of Medicine and the UF Shands Cancer Center.

There currently are plans to construct a multimillion-dollar proton therapy facility in Boca Raton, but construction would be years away.

Interestingly, Mary Ellen isn't the only person who found Jacksonville on her own.

"Eighty percent of our patients are self-referred," says UF Proton Therapy Institute Executive Director Stuart Klein. "At this point, we're doing very little advertising."

Maybe that's because the center now treats 100 patients a day just 19 months after opening, which Klein says makes it the fastest proton therapy startup ever.

But as with all such centers, candidates are closely evaluated before they are accepted for treatment. Most importantly, not all tumors are candidates.

And only a third accepted for treatment at Jacksonville come from greater Jacksonville, so treatment involves taking up residence for several weeks. And costs, while covered by most insurance and Medicare, are considerable. The Baldinos had a $2,000 deductible. But they ran up a tab for the six weeks at the institute of $155,000.

Vince turned out to be a good candidate for proton therapy after all his information, from family history to MRI results, was examined.

"The following week, we went up (to Jacksonville) and brought everything with us we would need. I was happy I wasn't leaving my children," says Mary Ellen.

"We ended up getting an apartment and coming home on weekends. He had only six weeks of treatment twice a day. We were home the week of Thanksgiving."

She pauses and cries softly.

A lot of tears flow at the center. Most patients who seek out proton therapy are battling cancer. Prostate cancer is high on the list.

UF's center actually has a waiting list for prostate tumor treatment because the disease is slow-growing and waiting doesn't involve much risk.

But Klein says for other disease, "There's really no waiting list."

Whether you have to wait or not, for those getting treatment, the facility can seem overwhelming. A massive, 98,000-square-foot building houses the four treatment rooms for proton therapy patients. (Conventional radiation therapy is also available.)

The patients are treated on beds molded to their bodies and the proton radiation beam is delivered either by moving around the patient or by a fixed beam.

From the patient's perspective, the treatment doesn't appear intimidating.

But during a tour, given to patients and media, you go behind the concrete walls and come upon a machine, called a cyclotron, that weighs 440,000 pounds and is powerful enough to accelerate the proton beam to nearly the speed of light.

Klein joked on a recent tour that it is the safest place to be if a Category 5 hurricane were headed his way; the walls are thick, up to 18 feet.

But his real concern, and that of the clinical staff, is upping cure rates and reducing doses of toxicity to patients, especially children, who have to be anesthetized so they don't move around during tumor treatment.

There isn't much long-term information yet about the effectiveness of proton therapy, but the center has clinical trials going on that accept patients who haven't yet been treated for their tumors.

As for Vince Baldino, he's doing well.

"Everything is gone. I was told there's no (other) radiation damage. I still have to have an MRI twice a year, but I can do those locally."

Then, adds the chef, "that's a piece of cake."

The difference between proton and conventional radiation

Physicians can control how deep the radiation will penetrate the patient's body with protons by calculating the depth of the tumor.

More radiation is required with conventional radiation if the tumor is deeper, which causes more damage to surrounding tissue.

By adjusting the speed of the protons, doctors can target tumors with minimal damage to other parts of the body. That reduces side effects and lessens the risk of complications.

The proton beam more precisely targets tumors, doctors say, than conventional radiation.


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