Many people with leukemia experience cognitive (mental) changes, becoming unusually forgetful, confused, or generally “foggy.” These symptoms are commonly referred to as “chemo brain.” Chemo brain can be caused by treatments for leukemia, including chemotherapy and radiation therapy, as well as cancer itself. In most cases, these mental changes are temporary, but they may be long-lasting for some people.
There are many different ways that chemo brain may present in people with leukemia. Its symptoms, as well as its effects on daily life, can vary, but there are ways of managing cognitive changes during chemotherapy — with your doctor and at home.
Chemo brain, also referred to as brain fog, is a term that describes several cognitive changes that can occur as a result of cancer and cancer treatment. These changes may affect a person’s memory, problem-solving skills, and communication, causing them to become forgetful or to have difficulty with certain tasks or skills.
As its name implies, chemo brain is very common among people undergoing chemotherapy — it affects as many as 75 percent of those receiving the treatment. However, chemo brain may also occur with other types of cancer treatment, including radiation therapy, hormone therapy, and surgery. Some people with leukemia also find that the symptoms of leukemia, as well as the stresses and life changes that come with a cancer diagnosis, leave them feeling foggy or scattered.
Many MyLeukemiaTeam members have described what chemo brain feels like and how it affects their day-to-day lives.
For some members who don’t expect it, this symptom can be frightening. “I’ve had chemo fog this week,” wrote one member. “It was my first time, and I didn’t know what was wrong with my brain. Scary — I thought I was losing it.” Another recalled, “The first time I had chemo fog, I was talking to my mom. It was like I was talking, but the room got brighter. I felt like I was listening to someone else (like if I walked out of my body). It scared me.”
Chemo brain may cause the following symptoms:
Memory changes are some of the most common symptoms of chemo brain. The changes may involve general memory loss, such as trouble remembering people or places, dates, or where you put down frequently used objects. One MyLeukemiaTeam member shared that they have become “very forgetful about certain things,” writing, “I’ve been leaving my purse behind.” Another wrote, “I’m so forgetful. It’s frustrating.”
Some people may have particular difficulties with verbal memory (remembering conversations they’ve had) or visual memory (remembering images or lists). As one member wrote, “My oldest laughs at me because I forget things we talk about. Names I used to know. So frustrating.”
It can be particularly difficult to forget things that you normally don’t think twice about. “I was at work,” wrote one member, “and couldn’t remember a lot of the things I’ve done for two years.” Another member shared, “Everything is well over here, except getting locked out of my iPhone! Smarty here changed the code and totally forgot it the next day. The perks of chemo brain.”
Some people with chemo brain find that they have difficulties concentrating on tasks — especially for extended periods of time. As one member wrote, “I hope I can keep up with this site. My chemo brain frustrates me when it blocks my train of thought.”
Chemo brain can cause a person to become disorganized and have difficulty performing tasks, especially multiple tasks at once (multitasking).
Memory loss or difficulty concentrating can make communication more difficult. People experiencing chemo brain may find themselves struggling to find the right word or have difficulty finishing sentences in the middle of a conversation.
For some people, chemo brain causes them to feel confused or generally out of it. As one MyLeukemiaTeam member described, chemo brain made them feel “fuzzy-headed.” Another wrote, “I hate that chemo fog. I feel like my brain is congested and can’t seem to grasp the simple things in life.”
This loss of mental acuity (sharpness) can also slow a person’s reaction time. You may, for example, find yourself taking longer to stop at a traffic light when it turns red.
Experts are not sure exactly what causes chemo brain. Several factors likely contribute to a person with leukemia developing chemo brain, making it difficult to identify any single cause.
Chemo brain gets its name from chemotherapy because this treatment is often behind changes in cognitive function in people with leukemia and other cancers. “I have been on Gleevec 600 milligrams for three years,” wrote one MyLeukemiaTeam member. “I get very tired and have pain and chemo fog.”
Other treatments for leukemia can also cause cognitive changes. Like chemotherapy, radiation therapy can affect a person's ability to remember things and concentrate on tasks. Bone marrow transplants (which often require high-dose chemotherapy beforehand) and surgery may also cause a person with leukemia to experience cognitive changes and mental fog.
Research has found that people with cancer who have never undergone chemotherapy may still experience chemo fog. Cancer-related pain, fatigue, infection, and anemia (low red blood cell count) can also contribute to cognitive changes in people with leukemia.
Being diagnosed with leukemia is often a stressful experience, and related anxiety, depression, and difficulty sleeping can affect memory and cognitive function.
Several other factors appear to contribute to the development of chemo brain in people with leukemia and other types of cancer. Those who are genetically predisposed to developing chemo brain may be more likely to experience the symptom, as well as those with other preexisting health conditions (including diabetes, depression, anxiety, and thyroid problems). Certain medications used during cancer treatment, such as those used to manage pain, may also cause a person to feel confused or forgetful.
There are no tests used to confirm a diagnosis of chemo brain. However, if your doctor believes that factors unrelated to leukemia may be contributing to your cognitive symptoms, they may ask that you undergo blood testing or brain scans (such as an MRI) to determine the underlying cause.
Most cases of chemo brain are temporary. Treatment-related cognitive changes generally resolve over time after you stop taking the medication responsible for them. It is important to talk to your doctor if you experience cognitive changes before, during, or after your leukemia treatment. They will be able to help identify the cause of these changes and work with you to find the best way of managing them.
Some people with leukemia experiencing chemo brain find that adjusting the dosage of their medication helps alleviate the symptoms. As one MyLeukemiaTeam member wrote, “I have a new oncologist/hematologist that rolled back the strength of my Sprycel (dasatinib). That has helped with side effects of brain fog and forgetfulness, which is a huge help.”
As always, discuss any potential changes in medication or dose with your doctor. Do not stop taking your medications as directed without medical advice.
Your doctor can help minimize or manage other leukemia-related conditions, like depression, difficulty sleeping, and anemia, to improve cognition.
The United States Food and Drug Administration has not approved any medications to treat chemo brain itself. However, other medications — such as those used to treat attention deficit hyperactivity disorder, Alzheimer’s disease, and sleep disorders — may help manage this symptom for some people.
Your doctor may recommend working with a professional, such as a neuropsychologist, who specializes in helping people manage cognitive conditions. This approach is sometimes called cognitive remediation or cognitive rehabilitation. Neuropsychologists or other specialists can suggest ways of improving your memory and adapting your daily routine to work with your chemo fog symptoms.
A cognitive specialist may recommend the following techniques to manage chemo brain and its impact:
Navigating life with leukemia can be challenging. The good news is that you don’t have to go it alone.
MyLeukemiaTeam is the social network for people with leukemia and their loved ones. Here, members from across the world come together to ask questions, offer support and advice, and share stories of their everyday lives with leukemia.
Have you experienced chemo brain with leukemia? How have you managed it? Share your thoughts and experiences in the comments below or by posting on MyLeukemiaTeam.