After the Chemo — Do You Remember?

Amanda Gardner, HealthScoutNews Reporter

April 9, 2003

Mark Laufer can tell you the exact instant he realized something was wrong.

Laufer, 43, had just exited the New York City subway station at West 72nd Street in Manhattan and was walking home when he noticed a message on his cell phone. That wasn’t unusual. But when he went to retrieve the message, like he had hundreds of times before, he couldn’t.

And it wasn’t the phone that was the problem. “I could not for the life of me remember my password or remember the process for retrieving the message,” he says.

Laufer stood in this memory fog for more than 20 minutes, getting more and more agitated, before he finally remembered how to complete the process.

In retrospect, Laufer realized many other things had been eluding him over the previous several months, ever since he had undergone chemotherapy for breast cancer. The cancer itself was diagnosed in June 2002, and the cell phone incident took place only two months after Laufer’s last chemo session.

“There were very basic things that were not coming out of my mouth. It felt like a physical thing,” he recalls. “Everyone is absentminded at one time or another but this was a different feeling, as though somebody turned a switch off in my brain right in the middle of my sentence, and the word was kind of left behind the door. And I couldn’t open the door. I physically can feel the block in my brain. I know that I know it, but I can’t touch it; I can’t retrieve it.”

Laufer, along with countless other cancer patients, has been suffering from “chemobrain,” a set of changes affecting memory, attention and concentration that seem to result after chemotherapy.

The syndrome has been described by cancer patients for years, but it’s only recently that the medical establishment has started paying attention.

Dr. Stewart Fleishman, director of cancer supportive services at Continuum Cancer Centers of New York at Beth Israel Medical Center and St. Luke’s-Roosevelt Hospital Center, first heard the term from a patient in the early 1990s.

“I didn’t understand the magnitude of the problem,” he says.

Now he’s involved in a clinical trial to investigate if a central nervous system stimulant called Focalin, which is approved to treat attention-deficit hyperactivity disorder, might also mitigate chemobrain.

“This has never really been acknowledged by the cancer community because people didn’t use to live so long with cancer, or they lived and were so appreciative of being alive that they were able to write up cognitive impairment or fatigue as the cost of being alive after cancer,” Fleishman explains. “As more and more people, especially younger women, started to live with breast cancer, that changed.”

Chemobrain fits in with a whole host of other post-cancer problems, including altered taste and digestion, changes in bowel movements, fertility and sexual functioning issues, not to mention worrying about insurance and whether or not the cancer is going to recur. Fatigue and chemobrain are high up on that list, Fleishman says.

The cause or causes are a mystery. It’s possible that some of the chemotherapy seeps into the brain.

There’s been more speculation that estrogen is involved because women going through menopause or perimenopause who don’t have cancer complain of many of the same symptoms.

“When you look at hormonally based cancers such as breast cancer, chemo knocks estrogen and knocks it fast,” Fleishman explains. “We know from the non-cancer world that too much estrogen is implicated in depression as is too little.”

Debra, 48, who asked that her last name not be used, lost her short-term memory sometime between her first and second chemo treatments for breast cancer. She was diagnosed in June of 2000. People around her suggested the powerful drugs had kicked her body into early menopause and the symptoms would go away when the treatments stopped. They didn’t.

“I experienced memory loss for months and months afterwards,” she recalls. “About a year ago, it felt like it was getting better and all of a sudden, I just lost it again.”

Debra is one of the participants in the Focalin trial, which is a Phase II double-blind, placebo-controlled study on cancer patients who have completed at least four courses of chemo. The research is sponsored by Celgene, the company that makes Focalin.

Unless and until the trial is a success, there’s little that can be done about chemobrain.

Sometimes, however, just having a name for it is a help.

“They say, ‘I thought I was the only one. I thought I was going crazy,'” Fleishman says. “Just bringing it out into the open is a great relief.”

Although there are no rigorous studies behind his advice, Fleishman advocates mental exercise, picking up a new skill, for instance (try learning how to use a palm pilot), as well as various common-sense strategies, good nutrition (including eating long-acting carbohydrates and keeping that intake even across the day) and exercise, which send blood to the brain.

Laufer says he tries to exercise his brain as much as possible.

And Debra continues her own battle with the problem.

“I don’t know if it will go away. It’s a very frustrating thing to go through,” she says. “I talked to my father, who’s 87 years old. He says he knows exactly what it is. I said, ‘Yeah, but I’m not 87 years old.'”

SOURCES: Stewart Fleishman, M.D., director, cancer supportive services, Continuum Cancer Centers of New York, Beth Israel Medical Center and St. Luke’s-Roosevelt Hospital Center, New York City; Debra, cancer patient, New York City; Mark Laufer, cancer patient, New York City

Cognitive Problems After Chemotherapy

Cancer Care, Inc.

Problems with memory and concentration (“cognitive” problems) related to chemotherapy have been talked about for 25 to 30 years, however it is only in the last 5 to 6 years that these problems are getting the kind of attention and research that they deserve.  

If you are experiencing these types of problems, you are not alone:

bulletNew learning
bulletManaging daily activities

These problems, and a general feeling of not functioning mentally as well as usual, are informally referred to by patients as “chemo brain.” Health care professionals call these symptoms cognitive deficits, from the word “cognition”, which means “thought”, and the word deficit, which means “falling short of”.
People often notice these changes during chemotherapy treatment however, the good news is that many people find that these difficulties have greatly improved or no longer exist within one year of completing treatment.  However, for some people, cognitive deficits can persist for years following completion of treatment.
Because of these difficulties, people often have a hard time:

bulletFinding the right word
bulletRefocusing on a task after being distracted
bulletLearning new material on the job or in school; 
bulletAdding or subtracting in their head without paper and pencil.

Causes of “Chemobrain”
Researchers still are uncertain of the exact causes of these difficulties with memory, attention, and managing tasks, but they are currently studying this problem in order to find ways to both treat and prevent it.  Although the  causes of long lasting “chemobrain” (more than one year after treatment) are not known, there are a number of very treatable factors that can cause temporary but similar problems in people undergoing chemotherapy. These include:

bulletLow blood counts
bulletFatigue and sleep disturbances
bulletMedication to treat side effects which can affect your alertness
bulletHormonal changes resulting from some cancer treatments

So tell your doctor if you’re having trouble with your memory or notice any other symptoms of chemobrain. S/he can help eliminate some of the factors as noted above that can also cause cognitive problems.  For example, medication that treats nausea can make you less alert and affect your ability to think clearly.  A simple change to your prescription may make a real difference in how you feel.

What is the role of Oncology Social Workers with Chemobrain?
Talking this over with a social worker who understands cancer issues can be very helpful.  Oncology (cancer) social workers are trained to help individuals cope with the emotional impact of these types of problems.  CancerCare’s staff of professional oncology social workers can work with you to develop a plan to help you address these difficulties, including referral to important resources. We offer detailed advice on the telephone, online, or in person to help you improve your functioning on many levels. CancerCare also offers education, financial assistance and information and referrals to other resources.