Angela Townsend
It’s been only in the past 30 years or so that patients and their physicians have been talking openly about problems that seem to creep up out of nowhere during a person’s cancer treatment.
Fuzzy or foggy thinking. Inability to multitask. Difficulty concentrating. Memory problems, especially the kind where the most basic of words are elusive in conversation. And, sometimes, insomnia and depression. But it wasn’t until the past decade that patients suffering from these side effects assigned those problems a name.
Some physicians prefer a more clinical-sounding term to describe challenges that patients face during and after their chemotherapy treatments, along the lines of “mild cognitive impairment” or “cancer-therapy associated cognitive change.”
But whatever it’s called, patients who have suffered from it will tell you how debilitating it can be.
Several books have been published on chemo brain in the past year (See). Study findings, strengthening earlier research that showed the correlation between chemotherapy treatment and its side effects, are appearing more frequently in medical and science journals.
The topic is so popular that three years ago physicians and researchers formed the International Cognition and Cancer Task Force.
This week, the group is holding its second conference in New York City, which is expected to draw about 150 people from around the world.
Members of the task force have been studying changes associated with cranial radiation and the impact of hormonal therapies on breast cancer and prostate cancer patients. But chemo brain is garnering the most interest and enthusiasm.
“This is really bringing together oncologists, psychologists, neuropsychologists, nurses and basic scientists interested in this topic,” said Tim Ahles, one of the conference organizers.
One major goal of the gathering is to foster cross-institutional studies, said Ahles, a behavioral psychologist who leads the Neurocognitive Research Laboratory at the Memorial Sloan-Kettering Cancer Center, host of the conference.
Continuing research is essential, because there are only 10 to 15 years’ worth of serious data on the topic, Ahles said. “There’s a lot we don’t know about it.”
While many patients may experience chemo brain during treatment, most regain their cognitive skills. Only a small subset, perhaps 20 percent of people, have longer-term problems, most doctors have observed.
Researchers want to know why that is the case, as well as how to distinguish chemo brain from cognitive decline related to hormonal changes from menopause or aging. They also want to find out how much chemotherapy dosage levels and treatment length contribute.
“Some of us are interested in genetic factors that may heighten one’s vulnerability to those effects,” Ahles said.
At the Cleveland Clinic, researchers have enrolled eight pairs (patients with early-stage breast cancer and a healthy friend or family member) for a pilot study on chemo brain. They are performing neurophysiological tests to see if it’s possible to measure what patients are experiencing.
Before having their first chemo treatment, patients are given a battery of tests that measure their cognitive skills. They also are screened for depression and motor strength, and asked about physical and mental fatigue.
After the patients’ treatments begin, researchers re-evaluate them, along with their partners who are the “control” group.
Both are also tested using an electroencephalogram (EEG), which measures brain waves.
“My colleagues in biomedical engineering were looking at these sorts of measurements in patients with multiple sclerosis and advanced cancer,” said Dr. Halle Moore, an oncologist at the Clinic’s Taussig Cancer Institute. “We thought this would be an interesting way to look at this chemo effect.”
Following surgery at the Clinic for a double mastectomy, Cheryl Lynch of Mentor signed up for the study with a friend.
“It’s kind of fun,” said Lynch, 55. “It’s strange. They put electrodes on your head. How can they possibly find out what’s going on in my head?” Lynch wasn’t completely unaware of “chemo brain” since close relatives with cancer also had been affected by it.
When she was diagnosed with breast cancer in July, Lynch said she anticipated that it might happen to her.
“Sometimes you can’t think,” Lynch said. “You have a definition in your head, but you can’t come up with the word.”
Lynch’s chemotherapy treatments, which she said often made her thoughts “fuzzy,” ended in late January. The fuzziness hasn’t gone away.
Most people’s side effects go away when their treatments are done, but there are patients whose problems continue, Moore said.
“There is certainly a lot more data describing the phenomenon,” she said. “What is lacking are interventions. Our hope is if we have a relatively easy way to measure the phenomenon, we can create [the treatments].”
Jean Alvarez, a social psychologist with a doctorate in education, is about a third of the way through enrolling 40 breast cancer survivors in a neurofeedback study. Alvarez is collecting data from eight participants who will receive biofeedback twice a week for 10 weeks. Her study will determine if the 45-minute session can help improve brain function.
Alvarez has a personal interest in the subject.
“I did very well with treatment,” said Alvarez, a 10-year breast cancer survivor. “But I never felt like I got my brain back.”
The symptoms she described — gaps in memory, low-level depression, fatigue — are typical of those who complain about having chemo brain.
“My mind was working much more slowly,” she said. Meditation and extra rest didn’t help.
Alvarez said she initially thought that medication not related to her cancer was to blame for her impairment. She stopped taking it. Her symptoms continued.
Her physician at the time wanted her to undergo neuropsychological testing. But Alvarez resisted. Thinking that the impairment was permanent, she said she didn’t necessarily want to know what else was “wrong” with her.
Two years ago, Alvarez stumbled on an idea after revisiting something she had previously read about neurofeedback.
She sought out psychologist David Granoff, at the time the only person locally who used NeurOptimal equipment, which uses noninvasive sensors to redirect brain patterns.
After three sessions, the insomnia that had plagued her for more than seven years after the start of her chemotherapy had disappeared. After 10 sessions, her depression was gone.
“My question was, am I just this unique, lucky person or is this something that’s going to be helpful to other people?” she said. “It’s not quite my area, but it’s researchable.”
Alvarez has teamed up with Granoff to form the Lake Erie Brain Performance Institute in Cleveland, which studies cognitive decline associated with aging and with chemotherapy.
“What I’m using now is very gentle,” said Alvarez, who herself gets neurofeedback every few months when she thinks she needs it.
“It gives the brain feedback about when it’s starting to behave turbulently or ‘wobbly.’ Then the brain starts to self-correct.”
More and more people are reluctant to undergo chemotherapy because of fears that the treatment will affect their thinking ability, said the Clinic’s Moore. But, perhaps not so surprising, those who were most aware of changes in their cognitive skills actually tested better, she said.
“It’s kind of great to be in a situation where we have better [cancer] treatments and now we’re focusing on quality-of-life issues,” Moore said.
