Unlocking the mysteries of `chemo brain'

Patients, doctors study side effects of chemotherapy

April 29, 2007|By New York Times News Service.

On an Internet chat room popular with breast cancer survivors, one thread - called "Where's My Remote?" - turns the mental fog known as "chemo brain" into a stand-up comedy act.

One woman reported finding five unopened gallons of milk in her refrigerator and having no memory of buying the first four. A second had to ask her husband which toothbrush belonged to her.

At a family celebration, one woman filled the water glasses with turkey gravy. Another could not remember how to carry over numbers when balancing the checkbook.

Once, women complaining of symptoms after undergoing chemotherapy, including short-term memory loss, an inability to concentrate, difficulty retrieving words, trouble with multitasking and an overarching sense that they had lost their mental edge, were often sent home with a patronizing "There, there."

But attitudes are changing as a result of a flurry of research and new attention to the effects of life-saving treatment. There is widespread acknowledgment that patients with cognitive symptoms are not imagining things, and a growing number of oncologists are rushing to offer remedies, including stimulants commonly used for attention-deficit disorder and acupuncture.

"Until recently, oncologists would discount it, trivialize it, make patients feel it was all in their heads," said Dr. Daniel Silverman, a cancer researcher at the University of California, Los Angeles who studies the cognitive side effects of chemotherapy. "Now there's enough literature, even if it's controversial, that not mentioning it as a possibility is either ignorant or an evasion of professional duty."

That shift matters to patients.

"Chemo brain is part of the language now, and just to have it acknowledged makes a difference," said Anne Grant, 57, who owns a picture-framing business in New York City. Grant, who had high-dose chemotherapy and a bone marrow transplant in 1995, said she could not concentrate well enough to read, garbled her sentences and struggled with simple decisions like which socks to wear.

Virtually all cancer survivors who have had toxic treatments like chemotherapy experience short-term memory loss and difficulty concentrating during and shortly afterward, experts say. But a vast majority improve. About 15 percent, or roughly 360,000 of the nation's 2.4 million female breast cancer survivors - the group that has dominated research on cognitive side effects - remain distracted years later, according to women who say they suffer from the ailment. And nobody knows what distinguishes this 15 percent.

Most oncologists agree that the culprits include very high doses of chemotherapy, like those in anticipation of a bone marrow transplant; the combination of chemotherapy and supplementary hormonal treatments, like tamoxifen or aromatase inhibitors that lower the amount of estrogen in women who have cancers fueled by female hormones; and early-onset cancer that catapults women in their 30s and 40s into menopause.

The central puzzle of chemo brain is that many of the symptoms can occur for other reasons.

Abrupt menopause, which often follows treatment, also leaves many women fuzzy-headed in a more extreme way than natural menopause, which unfolds slowly. Those cognitive issues are also features of depression and anxiety, which often accompany a cancer diagnosis. Similar effects are also caused by medications for nausea and pain.

The new interest in chemo brain is, in effect, a testimony to enormous strides in the field. Patients who once would have died now live long enough to have cognitive side effects.

As researchers look for a cause, cancer survivors are trying to figure out how to get through the day by sharing their experiences, and by tapping expertise increasingly being offered by Web sites like www.breastcancer.org and www.cancercare.org.

There are "ask the experts" teleconferences, both live and archived, and fact sheets to download and show to a skeptical doctor. Message boards suggest sharpening the mind with sudoku puzzles or compensatory techniques devised to help victims of brain injury. There are even sweat shirts for sale saying "I Have Chemo Brain. What's Your Excuse?"

Solutions come in many forms for women whose cancer treatment has left them with cognitive deficits.

Sedra Jayne Varga, 50, an administrative assistant in family court in Manhattan, is part of a research study of the stimulant Focalin, which she said has helped. But Varga also plans to have laser surgery on her eyes so that losing her glasses will no longer be an issue.

Terry-Lynne Jordan, 43, uses the calendar on her computer and voice mail messages to herself to keep track of meetings.

And Debbie Kamplain, a 32-year-old stay-at-home mother in Peoria, Ill., hired a $30-an-hour personal organizer to help her sell a house, buy another and get ready to move. But it is Kamplain's 2 1/2 -year-old son, Daniel, disabled by cerebral palsy and only now learning to speak, who sees to it that she stays on task.

"Poor kid," Kamplain said. "I say I'm going to do something, forget about it immediately, and he's the one who has to remind Mommy about stuff."

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