Studies recognize "chemo brain"

On an Internet chat room popular with breast-cancer survivors, one thread — "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 a constellation 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."

Change in attitude

But attitudes are changing as a result of research and new attention to the after-effects of treatment. Now, there is widespread acknowledgment that patients with cognitive symptoms are not imagining things, and more 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 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 such as which socks to wear.

Virtually all cancer survivors who have had toxic treatments such as chemotherapy experience short-term memory loss and difficulty concentrating during and shortly afterward, experts say. But a vast majority improve.

About 15 percent — 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 have the condition. Nobody knows what distinguishes this 15 percent.

Culprits pinpointed

Most oncologists agree the culprits include very high doses of chemotherapy, such as those before a bone-marrow transplant; the combination of chemotherapy and supplementary hormonal treatments, such as 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 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 problems are also features of depression and anxiety, which often accompany a cancer diagnosis. Similar effects are also caused by medications for nausea and pain.

Dr. Tim Ahles, one of the first U.S. scientists to study cognitive side effects, acknowledges studies have been too small and lacked adequate baseline data to isolate a cause.

"So many factors affect cognitive function, and the kinds of cognitive problems associated with cancer treatment can be caused by many other things than chemotherapy," said Ahles, the director of neurocognitive research at Memorial Sloan-Kettering Cancer Center in New York.

The new interest in chemo brain is testimony to enormous strides in cancer treatment. Patients who once would have died now live long enough to have cognitive side effects.

"A large number of people are living long and normal lives," said Dr. Patricia Ganz, an oncologist at UCLA who is one of the nation's first specialists in the late side effects of treatment. "It's no longer enough to cure them. We have to acknowledge the potential consequences and address them early on."

Studies of cognitive effects have overwhelmingly been conducted among breast-cancer patients because they represent, by far, the largest group of cancer survivors.

Most researchers studying cognitive deficits say they think that those most inclined to notice even subtle changes are high-achieving women juggling careers and families who are used to succeeding at both.

They point to one study that found that complaints of cognitive deficits often did not match neuro-psychological tests, suggesting that chemo brain is a subjective experience.

"They say, 'I've lost my edge,' " said Dr. Stewart Fleishman, director of cancer-support services at Beth Israel and St. Luke's/Roosevelt hospitals in New York. "If they can't push themselves to the limit, they feel impaired."

Fleishman and others were pressed as to why a poor woman, working several jobs to feed her children, navigating the health-care system and battling insurance companies would not also need mental dexterity. "Maybe we're just not asking them," Fleishman said.

Linda Lowen, 46, had a hysterectomy and chemotherapy for ovarian cancer 13 years ago and said she still cannot recognize neighbors at the grocery. "I had a mind like a steel trap, and I ended up with a colander for a brain," said Lowen, a radio and television talk-show host in Syracuse.

The other night, Lowen set out to find a good place to store her knitting supplies. She began emptying a cabinet of games her teenage daughters no longer played. Meanwhile, she noticed a blown light bulb and went to find a replacement. That detour led to another, and five hours later she had scrubbed every surface and tidied the contents of eight drawers. But she still had no storage space for her knitting supplies.

"I have an almost childlike inability to follow through on anything," Lowen said.

Solutions come in many forms.

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

Lu Ann Hudson, 44, a designer of financial databases in Cincinnati, relies on a key fob that sets off a beep in her car when she is looking for it in parking lots. Terry-Lynne Jordan, 43, who analyzes environmental incidents for an oil company in Calgary, Alberta, uses the calendar on her computer and voice-mail messages to herself to remind her of meetings.