Milwaukee Journal Sentinel
September 2, 2007
LeAnn Sucher was at her son's tennis match shortly after she completed chemotherapy for breast cancer.
A former competitive tennis player herself, Sucher, 47, was having such a hard time remembering the score that she needed to use pebbles and stones to keep track.
Debbie Hintz, 45, came out of a Catholic bookshop while undergoing chemotherapy for breast cancer and couldn't find her car keys.
She went back into the store, where some older women told her to pray to St. Anthony, the patron saint of lost things. Eventually she found the keys, but she's still waiting for her old memory to show up.
After undergoing surgery, radiation and chemotherapy for his brain tumor, Jim Smyth, 45, developed extreme fatigue and concentration problems that didn't go away when the treatments ended.
He lost several jobs, including a six-figure sales position, and now delivers newspapers for a living.
For years, the condition that has come to be known as "chemobrain" was mostly an anecdotal phenomenon, talked about in cancer support groups, but not taken too seriously by the medical field.
But doctors are finding it harder to be in denial about the malady.
Over the last few years, research including brain imaging, cognitive testing and lab studies suggests that chemotherapy can have harmful effects on the brain.
A 2005 review article said that up to 40% of breast cancer patients who underwent chemotherapy suffered mild cognitive impairment, with memory loss and lack of concentration the most common symptoms. While the symptoms seem to be temporary, they can last for several years.
As new cancer drugs are developed and cancer patients survive longer, the issue is getting more attention. Some physicians even are prescribing drugs normally used to treat ailments such as narcolepsy and attention deficit hyperactivity disorder for suspected chemobrain.
Earlier this year, neuropsychologist David Sabsevitz opened a clinic at Froedtert Hospital for cancer patients who might be suffering from chemobrain.
The clinic is for both brain tumor patients who will be undergoing treatment and for any cancer patients who are experiencing chemobrain symptoms.
"I realized how many patients go unnoticed (by doctors) months or years after their treatments," said Sabsevitz, an assistant professor of neurology at the Medical College of Wisconsin. "They suffer a lot."
At the same time, Sabsevitz and Medical College researchers are planning to follow breast cancer patients before, during and after their chemotherapy treatments. They'll be using MRI brain scans and mental testing to look for the immediate and long-term cognitive effects of chemotherapy.
Uncertainty over cause
While chemobrain, also known as "chemofog," has gained more acceptance, there still is uncertainty over what causes it and whether it is temporary or permanent.
In two small groups of testicular and breast cancer patients, between 60% and 70% of the patients experienced some cognitive decline that was tied to the onset of their chemotherapy, said Christina Meyers, a professor and chief of neuropsychology at the M.D. Anderson Cancer Center in Houston.
"It's subtle," she said. "We are not talking about dementia or anything grossly obvious."
Within one year, about half of the patients were back to their pretreatment levels of cognitive ability, Meyers said.
For years, chemobrain was written off as a condition that came with the stress and depression of being diagnosed with cancer.
It also was attributed to the age of the patient, partly because many of those who complained of it were breast cancer patients who were in menopause. Indeed, chemotherapy can put a woman into early menopause, and some research suggests that up to one-third of breast cancer patient have some mild cognitive impairment before beginning treatment.
But more recently, researchers have learned that chemotherapy agents can be lethal to brain cells.
When researchers at the University of Rochester last year tested three common chemotherapy drugs in the lab and on mice, they found that all three were toxic to brain cells.
In fact, the drugs were found to be more toxic to certain brain cells than to cancer cells, killing 40% to 80% of cancer cells and 70% to 100% of brain cells.
"We know they (the cancer drugs) get into the brain," said senior author Mark Noble, a professor of genetics, neurobiology and anatomy. "This is a problem to be taken seriously."
In addition to its direct neurotoxic effects, chemotherapy can affect hormone levels, which, in turn, can affect cognition. Another explanation is that chemotherapy can affect the immune system and lead to inflammation that can harm the brain.
In January, Japanese researchers using MRI scans found that breast cancer patients undergoing chemotherapy had shrinkage in certain brain regions, when compared with breast cancer patients who did not get chemotherapy.
The shrinkage corresponded to lower scores on tests of attention, concentration and visual memory one year after treatment.
The good news is that three years after treatment no differences could be found.
The big question that still remains: If doctors find a cognitive deficit, is there anything they can do about it?
Accidental diagnosis
Jim Smyth of Whitefish Bay learned that he had a brain tumor in 2001 purely by accident.
He was selling medical equipment for a company that makes MRI scanners and volunteered to undergo a brain scan as part of demonstration for a customer.
He became suspicious when the technicians who did the scan wouldn't tell him anything.
"Nobody would even look at me," Smyth said.
The next day he learned there was a tumor on the right side of his brain.
The tumor was surgically removed and found to be benign, but three years later the tumor was back, and this time it was cancerous, he said.
He went through surgery again and also underwent 45 days of radiation and a yearlong round of oral chemotherapy.
About halfway through the chemo, he started having memory, concentration and motivation problems.
He would be talking to his wife and he could not respond right away to things she was saying.
While some people make out a list of items to buy at the grocery store, Smyth had to make out lists to remind himself to go to the grocery store.
He would get up at 6 a.m. and go back to bed at 9 and sleep for the rest of the morning. Then he'd get up for lunch and go back to bed and sleep until 3.
His wife, Sue, would come home and the dishes still would be dirty and the house a mess, he said.
"I kept saying, 'I can't help myself,' " he said.
He eventually lost three jobs.
Even more disappointing were the problems he was having playing games or just spending time with his children, who are 17 and 12.
"I'd say, 'No, I'm too tired,' " he said.
About a month ago, after an assessment at Froedtert's Neuro-Oncology Cognitive Clinic, Smyth was put on the drug Provigil (modafinil), a stimulant that can improve alertness and concentration.
The drug, which has been nicknamed the "genius pill," normally is used in people with sleep problems, but now is being tried in people with symptoms of chemobrain.
In Smyth's case it is not known whether the surgery, radiation, chemotherapy or all three have caused his cognitive problems.
In June, a University of Rochester study involving 68 women who had completed chemotherapy for breast cancer showed that Provigil substantially improved memory, concentration and learning.
Already, Smyth credits the drug with completely turning around his life.
His memory, concentration and motivation have improved, he said.
He recently got a job delivering newspapers every day.
"It's not near the money I was making," he said. "I was in the six figures. Now I'm making $250 a week. But it's more than the money. It's being part of the family and contributing to the family."
First signs
Debbie Hintz was undergoing chemotherapy for breast cancer in 2000, and at the same time she and her now-former husband were building a house.
One of the first signs that the chemo might have been affecting her brain was her inability to make decisions about paint or decorating.
"I'd walk around in stores and say, 'I don't know. I don't know,' " she said. "I couldn't choose a color. I said just paint everything white and when I get better, I'll choose the colors."
But while her cognitive problems have improved somewhat in recent years, she still has problems with memory and concentration.
"I was always a big reader," she said. "I just don't read much anymore. My concentration fades in and out."
Once a person with an excellent memory, she said she still continues to have problems remembering things such as names.
And, she said, she just doesn't think as fast as she did before undergoing chemo.
"Multitasking is out of the question," she said.
Hintz, who works at the front desk at a medical imaging clinic, said it was not until long after going through chemo that she learned that the treatments could affect her cognitive abilities.
Just learning about chemobrain was a big relief, she said.
"I thought I was losing my mind," she said.
Reached a plateau
LeAnn Sucher of Germantown underwent chemotherapy for her breast cancer in 2004. Several months into the treatments, she began having problems remembering things.
She would come back from the grocery store and realize she forgot something. She would return to the store, only to forget what she came for once she was inside.
She would bring up a topic with her husband, who would tell her that they'd already discussed the issue.
Last year, her son brought a movie ticket home from school. Sucher said she would put it in a place where it could be found later.
However, when her son asked about the ticket, she couldn't find it, even though she looked everywhere. And when it finally turned up, it had expired.
Sucher, who works as a surgical nurse, has a locker that she uses every day, but she must check the combination that she has written down each time she uses it.
Ironically, she has no problem remembering the combination of a lock in the family's home that she uses only once or twice a year. That may be because she learned the home combination long before undergoing chemotherapy. She got the locker at work after she started her treatments.
She said when she brought up her memory problems with her oncologist, he asked her if anyone in her family had Alzheimer's disease.
Sucher said her problems were worse while she was going through chemotherapy. While they have improved, she said, she seems to have reached a plateau.
She said she writes down everything that she has to remember.
"People in their 40s for the most part don't get up in the morning and worry about what they are going to forget," she said.
Copyright (c) 2007, Milwaukee Journal Sentinel