August 30, 2002 Friday Ontario Edition
Kirsten Fifield, Torstar news service
Like most parents, Diane Benoit-Newman eagerly anticipated the day her daughter would take her first steps.
She never imagined she'd be unable to walk beside her.
As the multiple sclerosis which took Benoit-Newman's body hostage six years ago progressed, her vision of taking her daughter Alexxus-Leigh, now 31/2, for walks in the park seemed to be slipping away.
"Last year, I couldn't walk a whole block," said the 32-year-old Cambridge resident. "I couldn't even walk up the little hill to the park." But after taking the drug Mitoxantrone HCL, which goes by the trade name Novantrone, seven times over the last 18 months, she can do the walk at least four times a week.
MS is a chronic and often disabling disease of the central nervous system that is usually diagnosed between the ages of 20 and 40. Symptoms can range from numbness in the limbs to paralysis or loss of vision. There is no cure, nor any way to predict the progression or severity of symptoms in someone diagnosed with the disease. However, various drugs and therapies are attempted to try to slow the advance of MS and help manage some symptoms.
Benoit-Newman is one of a select group of Canadian MS patients receiving the drug Novantrone.
Although it has been approved by the U.S. Food and Drug Administration for multiple sclerosis treatment, Novantrone does not have matching approval in Canada and is only available to MS patients through specialized clinics.
Centres across the country are trying the drug on some of their MS patients.
Benoit-Newman, who takes treatments at Cambridge Memorial Hospital, is under the care of Dr. George Rice of the London Health Sciences Centre.
Dr. Debbie Mason, a neurology clinical fellow in multiple sclerosis in London, said Novantrone is regularly used by the hospital's oncology department to treat a number of malignancies, including prostate cancer, and the drug's manufacturer has asked Health Canada to extend its use to MS patients.
In the meantime, the centre's pharmacy approved its use for about 20 MS patients.
To be eligible, patients must have experienced several relapses in recent years, demonstrated increasing levels of disability, which indicates an active form of the disease, and have failed to respond to other medication.
Although some patients have not benefited, Mason said Benoit-Newman has had an excellent response.
"It's just been an ongoing progression of changes," said Benoit-Newman, who noticed dramatic improvements in her energy level, balance and ability to walk within a few weeks.
The shaking of her head and right hand has also stopped.
"This is really a miracle," she said, describing how the drug, which she now takes every four months, has restored her ability to care for her daughter.
Although being a "normal" mom is not an attainable goal, she said, she can now meet her daughter's daily needs because the drug seems to have stalled the progression of her disease.
"The hope is to give the person with multiple sclerosis a better quality of life" by controlling symptoms, Benoit-Newman said.
Mason said while the drug is not expected to improve or cure a patient's condition, MRI scans show that it reduces the inflammatory activity seen in MS patients.
She said patients responding to Novantrone experience slower progression of the disease and tend to have slightly fewer relapses than patients not receiving the drug.
"It's meant to settle down the disease and buy them more time," Mason said.
However, because Novantrone is an anti-neoplastic or anti-cancer drug, it is toxic to the heart, and studies show eight treatments are the maximum accumulative dose an individual can tolerate.
In the best-case scenario, multiple sclerosis would go into remission, although it is impossible to predict how long that might last.
London Health Sciences Centre is fairly new to the use of Novantrone for multiple sclerosis and one year is the longest period of remission recorded there to date, Mason said.
Benoit-Newman, one of London's first patients to receive the treatment, views every extra day as a gift.
"My whole goal was to take care of Alexxus," she said. "Even if it only gave me those two extra years, I can't say enough about how grateful I am because there was just so much more I was able to do with her."
And although Benoit-Newman isn't sure what will happen in the years following her final treatment Oct. 25, her experience has taught her to deal with problems as they come.
"I would definitely not change a tear of frustration or a thought about
it," she said. "I would never look back."
© Copyright 2002 Toronto Star Newspapers, Ltd.