Chemobrain: An Individual Experience

Not everyone who undergoes chemotherapy will experience cognitive side effects. For those who do, the severity and duration of symptoms varies from person to person. Cognitive difficulties may be mild and only slightly noticeable, or very noticeable.

The severity of symptoms may depend on several factors, such as the dose and type of chemotherapy used, cancer diagnosis, age, stress level, and underlying medical conditions. Even people with the same cancer type who undergo the same chemotherapy regimes can experience different cognitive effects.

While chemobrain may occur at any point, it tends to occur more frequently during chemotherapy and shortly after chemotherapy is finished. Cognitive changes may happen suddenly (acute onset), or emerge slowly over time (gradual onset). For some, cognitive problems are brief and subtle, lasting anywhere from a few weeks to a few months after chemotherapy. Others experience long-lasting (chronic) mental changes that can last up to a year or several years after completing treatment. Generally, symptoms tend to improve over time.

What Causes Cognitive Dysfunction?

Today it is common for oncologists to administer more aggressive, higher-doses of chemotherapy in combination with other treatments. Thus, as many patients become long-term cancer survivors, cognitive side effects like chemobrain become more common.

The causes of chemobrain are not clearly understood at this time. Since so many factors can affect cognitive function, this condition is difficult to measure. Cancer treatment, its side effects, and cancer itself are some factors that may contribute to the cognitive dysfunction associated with chemobrain.

Cancer Treatments

The frequency and severity of cognitive changes associated with chemotherapy may vary with the type of medicine used, the dosage, the method of administration, and drug combinations. For instance, higher doses of chemotherapy may be related to greater cognitive difficulties.

Some researchers believe chemotherapy can affect the way your brain functions, although it is not completely understood how. One theory is that chemotherapy drugs circulating in the blood may be able to cross the “blood-brain barrier” (a membrane that surrounds the brain and protects it from toxins in the blood).

Researchers are using MRI and other technologies to identify which parts of the brain are affected by chemotherapy. Some findings have revealed smaller regions in the brain that are associated with memory. The assumption is that during chemotherapy, the brain may have a reduced capacity to process information, and thereby has to work harder to remember things.

Aside from chemotherapy, researchers are studying the role of other cancer treatments like radiation therapy, surgery, and immunotherapies (e.g., interferon), as well as adjuvant medications (e.g., steroids, anti-nausea medication, sedatives) in causing cognitive side effects.

Side Effects of Cancer Treatments

Some researchers believe chemobrain is a byproduct of cancer treatment. For instance, chemotherapy side effects like anemia, cancer-related fatigue, and depression, may be the cause of cognitive problems like memory lapses and concentration difficulties.

Cancer Itself

Some patients may experience cognitive declines even before chemotherapy begins. Thus, researchers question whether chemobrain is then the result of the disease process itself, or the body’s response to fighting the cancer.

Other Factors

Other factors that may contribute to, or imitate, the cognitive dysfunction associated with chemobrain include:

• Aging
• Depression
• Mental and emotional stress/anxiety of coping with cancer
• Low blood counts
• Anemia
• Fatigue and sleep disturbances (e.g., insomnia)
• Malnutrition, dehydration
• Menopause (either naturally occurring or induced by chemotherapy)
• Medications (e.g., for pain or nausea)
• Hormonal changes
• Genetic differences (e.g., carriers of the E4 version of the APOE gene, linked to Alzheimer’s disease)
• Co-existing medical conditions (e.g., neurologic disorders, multiple sclerosis)

Researchers continue to examine the causes of chemobrain, as well as what can be done to manage and prevent it. As more studies explore this issue, the exact cause(s) of cognitive changes will become clearer.

A Common and Real Phenomenon

Over the years, cancer survivors have wondered why they had difficulty remembering things or concentrating on simple tasks. Clinical studies evaluating these changes were scarce and healthcare providers tended to dismiss their symptoms, believing chemobrain did not exist. Patients were left to feel that the cognitive changes they were experiencing were a figment of their imagination.

Today, the oncology community and researchers have begun to acknowledge chemotherapy-related cognitive dysfunction as a real phenomenon. For people living with cancer, the word “chemobrain” has become part of the language. The recognition that this is a real condition has brought relief to those who experience its unwanted effects.

Managing Chemobrain

As new treatments become available, and as cancer patients become long-term cancer survivors, the long-lasting effects of cancer and its treatment begin to surface. One of these potential side effects, chemobrain, can interfere with your ability to maintain a productive, fulfilling life.

Researchers are currently studying possible interventions for the cognitive impairment associated with chemotherapy. Medications for depression, attention-deficit hyperactivity disorder (ADHD), and dementia are being investigated for their potential to improve thinking and memory problems in cancer patients. Aside from pharmacologic interventions, other techniques may include behavioral strategies, lifestyle alterations, rehabilitation therapies, and counseling.

Since cognitive changes vary from person to person, an individual assessment is an important first step in ruling out other conditions and developing appropriate intervention strategies.

Communication with your healthcare team

Just like with other side effects of cancer treatment, if you are experiencing symptoms of chemobrain, it is important to keep your healthcare team informed.

The following are some questions you could ask your healthcare team:

• How long do symptoms usually last?
• Could any of my symptoms be related to something else, such as medication?
• If my symptoms persist, at what point should I come back for a follow-up appointment?
• Can you refer me to a professional (e.g., a neuropsychologist, oncology social worker, etc.) who can help me develop strategies to manage my symptoms?

Problems with memory, thinking and concentration can be very frustrating. Aside from seeking help from your healthcare team, there are other steps you can take to help reduce the impact of these changes on your everyday life.

NOTE: THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS REPORT ANY SYMPTOMS OF COGNITIVE DYSFUNCTION TO YOUR PHYSICIAN IMMEDIATELY.

Tips for Coping with Cognitive Dysfunction

• Be your own advocate. There is no one right way to cope with chemobrain, there is only your way. The more you understand about chemotherapy-related cognitive dysfunction, the more in control over your situation you will feel. A greater understanding can help you make more informed decisions about your treatment. It also can help you better explain what you need from your family members, friends and healthcare team. Speak up about your symptoms so you get the care you need.
• Create structure. Establish a daily routine and keep the same schedule each day. Divide tasks into manageable parts and do chores in the same order. Create an organized environment that is free of clutter. Keep commonly misplaced items, such as keys, in the same place each time you use them. Label or color code certain cabinets/drawers where you store things around your home. By creating structure, you can remove obstacles to remembering.
• Avoid distraction. We often do one thing while thinking about another. When you need to complete tasks that require concentration, try to minimize distractions. Work and read in a quiet, uncluttered environment. Try to recognize and address internal distractions, such as thoughts, hunger and fatigue as well. If you find yourself losing focus, stand up or take a short walk. Try to focus on one thing at a time.
• Give yourself reminders. Make a checklist, or a “to-do” list, of daily chores, errands and important things to remember (e.g., grocery list, medication schedules). Write your appointments in a calendar and put it in a place where you can see it throughout the day (e.g., on your refrigerator).Carry a personal organizer and/or notebook with you. If a task pops into your head, jot it down to get it off your mind. Place post-it notes around your house and workplace, or leave yourself voice mail messages as reminders. Get a key fob that sets off a beep in your car when you are looking for it in parking lots.
  
• Exercise your mind. To sharpen your memory, try learning a new skill, taking a class, or doing crossword puzzles (e.g., Sodoku puzzles) or other games. When reading, use a pencil or highlighter to increase your active involvement in a task. Use visualization to recall past activities. Chunk numbers instead of trying to remember an entire string. Use auditory cues by repeating information (e.g., a person’s name) out loud. Use mnemonics devices, or memory techniques like acronyms, rhymes and word play. Common examples include “i before e, except after c,” TGIF for “thank goodness it’s Friday,” and “30 days has September, April, June, and November.”
• Take care of yourself. Get plenty of sleep, exercise regularly, maintain a proper diet, and manage your stress. Exercise can help improve your mood and make you feel more alert, which can help with concentration. A balanced diet can help reduce fatigue and build mental stamina. Relaxation techniques like yoga can help you regain mental clarity. Rehabilitation, like physical and occupational therapy, may help improve your functional independence, mobility and productivity so you can better manage your daily life. Remember to recognize your limits and don't be afraid to ask for help.
• Keep track of your symptoms. Keep a daily journal to track changes in your thinking, memory and behavior, including when symptoms began, what time of day they occur, and what influences them throughout the day. Tracking when symptoms are most noticeable can help you better plan your day. Bring this information with you to your doctor’s appointments. It may also help to take someone with you to appointments, or bring a tape recorder.
• Talk with your healthcare team. Communicate your symptoms with your healthcare team. Your doctor may be able to help eliminate some other factors that may be causing cognitive problems. For example, a simple change in your medications may make a difference in how you feel. Keep all your healthcare providers informed and involved so everyone can work as a team. If you need additional assistance to cope with the symptoms of chemobrain, talk with your doctor about counseling and other available resources.
• Share your experiences with others. Be open with your family and friends about what you're experiencing. Even if the changes are subtle, it helps to make others aware of what you are going through. Your family and friends may even have some helpful input. Just getting it out in the open can help you relax. You may also decide to join a support group. An awareness that you aren’t the only one going through this can help you feel less isolated and alone.
• Don't forget to have fun. Sometimes being able to laugh about things you can't control can help you cope. Try not to focus too much on your symptoms. Instead of giving up on your favorite activities and hobbies, try them for shorter periods of time. Find new activities that don’t take a lot of effort but are still enjoyable. Learning how to accept changes can help you deal with them and move forward.

NOTE: THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTHCARE PROVIDER REGARDING ANY COGNITIVE DYSFUNCTION YOU MAY BE EXPERIENCING.

The experts at Cancer Treatment Centers of America (CTCA) address the multifaceted aspects of cognitive dysfunction by treating the whole person, not just the disease. We understand that chemotherapy-related cognitive dysfunction can affect many different aspects of your life. Using an integrative model of care, we strive to help you fight cancer and manage side effects like chemobrain at the same time.

The following are some highlights of the CTCA model of care:

• Individualized Plan: Your CTCA care team makes every effort to understand your unique medical condition and needs so we can develop a treatment plan that is tailored to you. Throughout your treatment, you'll receive individual assessments, evaluations, personal consultations, education, and support for dealing with cognitive problems and other side effects as they arise.
• Whole-Person Treatment: We understand certain factors can exacerbate cognitive problems, such as malnutrition, fatigue, pain, and stress. To address these issues, we provide complementary medicine therapies alongside your conventional cancer treatments. This includes nutrition therapy, naturopathic medicine, pain management, oncology rehabilitation, mind-body medicine, acupuncture, and spiritual support.
• Teamwork: At CTCA, you'll work closely with your own multidisciplinary care team. Since they are located under one roof, your care team is able to meet several times a week to share knowledge, coordinate treatments, and address all of your needs—physical, cognitive, emotional, and spiritual.
• Patient Empowerment: Your CTCA care team will empower you to make treatment decisions that are right for you, without allowing cognitive problems to get in the way. As part of our Patient Empowerment Medicine^SM philosophy of care, we put you first and empower you with information and support so you can feel more in control of your life and your health.
• After Care: Once your hospital treatment is complete, the CTCA After Care Program is designed to help you maintain your health and improve your quality of life. Your CTCA aftercare nurse will work with you to assess your symptoms and identify potential late or long-term effects of treatment, including chemobrain.

At CTCA, we understand side effects like chemobrain can interfere with your ability to lead a productive, fulfilling life. We are here support you so you can move beyond cancer and find healing and hope.

I hope this information has helped you in some way. I will check in with you again next month. In the meantime, stay strong and hopeful.