How patients cope with cognitive effects of cancer treatment

01 Dec 2016

Combatting Chemo Brain

By Shannon Burgert It was always in the back of Ron Giggey’s mind that he might get cancer. For nine years, as a chemical operator at Rocky Flats, he was exposed to plutonium 239 and americium 241 while directly involved with building triggers for atomic weapons. For 37 years after that, the Louisville resident served as a radiation-control technician, monitoring chemical exposure in other workers.
‘The last thing I want to do is forget things to do with my family.’ —Ron Giggey
It was in 2012 that he was diagnosed with prostate cancer, a cancer directly associated with the materials he was exposed to. The cancer spread to his liver, and Giggey, now 68, has undergone radiation, cryotherapy and chemotherapy. Among the side effects he’s endured is “chemo brain”—cognitive dysfunction commonly associated with cancer treatment. Giggey frequently misses his normal exit off the highway, and he is markedly forgetful. His wife, Michele, got him a notepad to write things down, but he forgets to use the notepad. Michele has learned to call him midday to remind him of dinner plans. “The last thing I want to do is forget things to do with my family,” he says. Giggey is waiting to learn how he has fared following his latest treatment. The cancer won’t be cured, but with any luck it’s contained. Chemo brain can manifest itself as confusion, feeling spacey, or having a short attention span. Information-processing speed can slow, and fine-motor skills may also be affected. The “tip-of-the-tongue” struggle is common, as is forgetting names. On the more severe side, someone might forget whom she just spoke to. Former Boulder resident Sheyna W., 40, now lives in Jerusalem and was treated there for lymphoma. During her cancer treatment, she at times had no recollection of events that others around her had experienced.
Although ongoing cancer treatment can make
concentrating a struggle, Boulder oncologist Leslie Busby, M.D., says it can also trigger milder, even
laughable moments. (Photo courtesy Leslie Busby)
Boulder oncologist Leslie Busby, M.D., says that people going through cancer treatment often struggle to concentrate, which makes it challenging for them to follow a plot in a novel or movie (magazines are easier to digest, he notes). Learning new material can be tricky. But chemo brain can also be mild, and sometimes even laughable—opening up the refrigerator and finding one’s glasses, for instance. A week after her 70th birthday, Jackie (who lives in Denver and preferred not to use her real name) was diagnosed with a rare form of lymphoma. The blood cancer is not curable, but it’s very treatable, Jackie says, and as cancer treatment goes, hers has been mild; she’s had a total of six chemotherapy treatments over six months. But while she did not lose her hair, she has felt a small loss of mental sharpness. When she first heard of “chemo brain,” Jackie thought it was a joke, and for the most part, she says, it doesn’t get in her way. She often forgets a question she was about to ask, or she’ll forget what the trump suit is while playing bridge. Sometimes it can be embarrassing, she says, but “mostly it’s been something I can laugh about rather than worry about.” Thanks to the chemotherapy, Jackie feels better than she’s felt in years. The fatigue that she was chalking up to aging has diminished, and currently the cancer is in check.

‘We Know It’s Real’

Cognitive changes associated with chemotherapy are perceptible in brain imaging. In one memory test in breast-cancer patients, the chemo-treated women used a larger portion of their frontal cortexes than the women who did not receive treatment. Essentially, the treated patients worked harder to perform the same task. “We know it’s real, and we know chemotherapy plays a role,” says Busby. Experts believe chemotherapy may result in DNA damage, inflammation and oxidative stress—an imbalance in the body’s defenses against free radicals, or unstable molecules. High doses of chemotherapeutic drugs pose an elevated risk for mental impairment. But the term “chemo brain” is limiting, says Jerome Stone, a Boulder-based home-care nurse. Medical practitioners agree that the factors that affect brain function during cancer are complex—and not crisply delineated. Difficulty sleeping, depression, other illnesses, stress and even the cancer itself may contribute. And it’s clear that certain factors increase one’s susceptibility to chemo brain: age, lifestyle and even genetics, such as a presence of the gene ApoE4, associated with Alzheimer’s disease. Cancer treatment targeted directly at the brain or central nervous system increases risk of chemo brain. Other cancer-fighting drugs, such as endocrine therapies, may also play a role, as can drugs that ease adverse effects of treatment. Giggey is currently on four medications that affect brain function, including Vicodin to combat pain; he views all his prescriptions as necessary evils.

‘Accelerated Aging’?

Another factor that can worsen decline is a lower cognitive reserve, a term that encompasses a blend of IQ, education, occupation and mentally stimulating activities. On the flip side, Stone points out that highly intelligent people can get particularly frustrated. “They’re so used to relying on their brains,” he explains. The confusion they experience can lead to panic and intensify the disorientation. Julie (a Boulder County resident who preferred to not use her real name), 57, says that cancer was easy to cope with compared to the cognitive dysfunction she’s endured. A Stanford grad, she was an environmental litigator for an international law firm when she was diagnosed with breast cancer in 2000. She underwent two rounds of chemotherapy as well as radiation. It was a few months after her treatment ended that she began to struggle with concentration. She had to take a leave from her job and then abandon it entirely. In the years that followed, Julie saw a psychiatrist, tried multiple medications (unsuccessfully) to combat the fog she felt, and had a mental breakdown. When years after her treatment she finally heard and read about chemo brain, “it was the first time anything in the past 10 years made sense to me,” she says. Cognitive tests confirmed what she already knew: Her processing speed had declined significantly, even when normed for age, gender and education. Recently, though, she’s been heartened by what she’s read about neuroplasticity, and she’s found a handful of activities valuable in making progress toward finding her former self. She sings in a choir (requiring substantial memorization of lyrics), and she believes music has played a role in strengthening her cognitive function. She engages in online learning, which allows time for her slower pace of acquiring information. Facebook is “freaking brilliant,” she says, calling it a giant neural map that has helped her collect her memories. And travel, she says, is very stimulating. “It makes my brain feel better,” she says, smiling. While Julie now wishes she’d opted for more surgery and less chemo, “the chemo did in all likelihood save my life,” she says. She’s been cancer-free for 16 years. Busby thinks of the impairment that he sees in cancer patients as a sort of accelerated aging. But, he says, while many people don’t ever recover completely from chemo brain, the fog does often lift.

Coping Aids

Although there is no known way to prevent the mental cloudiness associated with cancer treatment, there are strategies that can mitigate the effects. Keeping to his exercise routine has been invaluable, Giggey says. Exercise contributes toward healthy brain function, and it is probably the best defense against cognitive decline. Moreover, cancer treatment produces a variety of side effects, and exercise has a positive impact on multiple biological systems. As an example, exercise is known to combat depression.
In his practice Jerome Stone, R.N., focuses on people affected by the nuclear industry with cancer and other life-threatening or life-limiting conditions. Jerome is Ron’s nurse. (Photo courtesy Jerome Stone)
Rest is another essential, and Stone emphasizes that proper nutrition is key. He acknowledges that cancer patients often don’t feel like eating, and he suggests that they head for nutrition shakes and do their best to eat vegetables, which are vital. Planners and appointment books are extremely helpful, as is keeping a journal of signs and symptoms to share with your doctor. As much as possible, develop consistent habits, including using one place to keep your keys, cell phone, and anything else you want to take with you when you leave home. Use a pillbox to organize medications, and take them at scheduled times. Patients should avoid multitasking—talking on the phone while cooking, for instance, may be much more difficult than usual. “Know your vulnerable situations,” Stone advises. Try to track when you struggle more, and see if you can find a correlation, such as increased forgetfulness after you take medication. If possible, use your observations to adjust your schedule so that you take on the most demanding brain tasks when you have more clarity. Stone also encourages people to get out of the bedroom or the hospital room. “Hospitals themselves can be disorienting,” he explains. “Go to the cafeteria, listen to music, watch funny movies.” No medications have been approved to treat chemo brain, though drugs for other conditions with similar symptoms are sometimes prescribed. These include Ritalin (used to treat attention deficit/hyperactivity disorder), Provigil (normally targeted toward certain sleep disorders) and Aracept (used to treat Alzheimer’s disease). Busby, however, has not been impressed with the results. He believes that the value of behavioral therapy is underappreciated, noting that anxiety and depression can go hand-in-hand with cancer. Reducing stress is paramount. Jackie, a nurse herself, used to teach stress-reducing techniques, and she automatically turned to those. Meditation and mindfulness practices can help with focus and attention. “Find time to just be still,” says Stone. He encourages his patients to be careful not to get hung up on the chemo brain or focus on the forgetting—that only exacerbates the problem. If you forget something, let it slide if you can, he says. Ask for help. And above all, don’t be hard on yourself. Busby says, “Maybe we can’t do anything to totally counteract the effects of the chemotherapy, but if you have a propensity for this, maybe we can give you some tools to deal with it.”

Other Things That May Help

Brain fog can start the moment somebody says, “You have cancer,” says Carol Brooks, OT, who manages the Center for Integrative Care at Boulder Community Hospital. Your mind and body hear only that message, and everything else is shut out. But complementary medicine is “exponentially helpful” in alleviating the effects of the fog, she says. Acupuncture can combat the anxiety and insomnia that inhibit clear thinking, Brooks says. She also recommends Reiki, a Japanese technique for healing and stress reduction. Practitioners place their hands on or above a person to promote the person’s own energy and healing. “Reiki is grounding, so you are not feeling out of your body. It can start clearing that fog.” Speech and language pathologists can look at subtle changes in patients’ ability to understand, remember and express themselves. Brooks explains that such treatment “can provide new anchors to learning and other cognitive commitments that we all have, like ‘The garbage has to go out on Tuesday.’” Brooks also sees powerful results from oncology massage. Massage therapists trained in oncology massage take into consideration cancer symptoms and side effects of treatment. Oncology massage is gentle, and it can ease both physical and emotional effects of the disease.

Shannon Burgert, Ph.D., teaches fifth grade in Louisville.
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