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Editor’s note: This is part of a monthlong series on the battle against cancer in Butler County.
Every night, Jan Knisely takes a small beige pill he hopes will shrink the aggressive, grape-sized tumor in his brain.
He’s been taking the mystery pill from a bottle coded in numbers for six weeks as part of a national clinical trial studying a new drug that has shown promise in tests so far.
Knisely, 56, is battling a glioblastoma – a 2.4-centimeter tumor with octopus-like tentacles running through the left front of his brain. Described by the National Cancer Institute as the most common and most deadly type of brain cancer, glioblastoma is the same cancer that Sen. Ted Kennedy, with all of his connections and resources, couldn’t beat.
But Knisely, an anesthesiologist with a background in family medicine, is hopeful the clinical trial – which has 300 patients enrolled nationwide – will affect his tumor, which is rated the most severe at a Grade IV.
Knisely is optimistic he is receiving the new drug, but he knows he’s not one of the 40 percent of participants getting just that experimental drug.
He doesn’t know if the pill he swallows every night at his Loveland home – one of the 13 he now takes daily – is a lower dose of the experimental drug or a placebo. He doesn’t even know if his doctor knows.
Clinical trials are not a cure for individual patients. In the search for better treatments, trial drugs can be less effective than current treatments or ineffective altogether. Even new drugs with benefits might not work on everyone, according to the National Cancer Institute.
“It is disturbing,” Knisely said from an examination room at University Pointe, a West Chester Twp. office of University Hospital. Every Friday he has his blood drawn here and a neurological exam.
“I’d like to be optimistic. And I think the odds are in my favor. None of my symptoms have gotten any worse, which I think is a good sign,” said Knisely, who is in a group of participants who took Lomustine – a drug in short supply nationwide – at the beginning of the study in one dose of pills that is so potent that it would burn his skin if it touched his hands.
Knisely’s study is a “phase three” trial, the final required study of a new treatment. To Knisely and his girlfriend, nurse Sharon Gallagher, the trial was a chance to try a new treatment, a chance for more time together to do things they love, like travel.
“The clinical trial is my opportunity to be on the cutting-edge of new medicine,” Knisely said.
“To me, being in a research trial isn’t any more stressful than being in any other treatment because you don’t know if any of them will work,” she said.
“With cancer, you don’t know if anything is going to help. If they think this will work, we’re willing to try anything,” Gallagher said.
“You look at every day as a blessing and you appreciate it more,” she said. “Every day you’re worried that something’s going to happen to him. In the back of your mind, you’re always dreading that day because you know it’s going to come.”
Knisely was diagnosed in 2008 after knocking his head on a cabinet Nov. 17.
He didn’t immediately experience any problems and went to South Carolina for the weekend and then worked all day Monday.
But when he went home to take a nap after work, he woke up feeling nauseous and sweating all over.
Thinking it was the flu, Knisely took a bath, but soon found all he could do was lay on the bathroom floor.
That’s when half his vision field disappeared for just a few seconds – but as a doctor, Knisely knew that part of his vision was controlled by the opposite side of his brain, not the side he had knocked on the cabinet.
In the days following, his co-workers at Bethesda Medical and people close to him noticed a change in his personality. He was taken to University Hospital and on Dec. 1, he had a biopsy to confirm the diagnosis, though the tumor crossing the midline of his brain was inoperable.
For about a month, Knisely came to University Pointe every day for radiation and took a pill form of chemotherapy every night. But even after that, the doctor saw greater activity in his tumor at the end of July and he entered the trial.
Earlier research on the drug in Knisely’s trial showed tumors reduced in half of patients, according to findings presented at the American Association for Cancer Research annual meeting.
Even with treatments currently available, patients with a tumor like Knisely’s live little more than a year.
It’s been 10 months since Knisely was diagnosed and he knows there is no magic formula of drugs out there that will kill his tumor.
As a doctor, he knows too much, he admitted as he emptied his pockets, removed his belt and watch and placed everything in a locker before yet another MRI at University Pointe – his 10th since his tumor was first discovered.
The knowledge of what could happen runs through his mind, like the small population of people who die from the contrast material used in scans.
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