"Managing Chemo-Fog"
If I were confident my memory serves me correctly, I would ask, “Why wasn’t I told about chemo-fog?” Maybe I was told, but I don’t remember. I read a lot of warnings in fine print about chemotherapy drugs, but the first time I heard the term “chemo-fog” was from a fellow patient in our treatment room. I thought she was joking. I didn’t think so for long. After two treatments, I experienced some short-term memory loss. I forgot the directions my doctor gave me for medicine and could not even remember which lung my cancer had metastasized to when asked. (And I had a 50% chance of getting the right answer!) Both through experience and research, I find that chemo-fog is pervasive, serious, and often long-term; yet it is insufficiently discussed, underestimated, and misunderstood.
Patients have reported memory impairment lasting years and with a severity that impacts both social interactions and the ability to work. It is difficult to conduct clinical studies on this subject since memory and mental sharpness may be affected by other variables, such as age. Also, determining what caused a certain effect is problematic since changes can develop so gradually. Usually, the higher the dose of chemotherapy, the more pronounced the cognitive effects are. Scientists surmise that “cytotoxic chemotherapy agents induce oxidative DNA damage and affect molecular and epigenetic processes in the brain.” (1) Though, even those who study central nervous system toxicity don’t fully understand the mechanisms creating harmful effects.
Alarmingly, side effects were found to occur in about 75% of all patients! Exacerbating the patient’s experience is the fact that chemo-brain is occasionally not recognized as a medical condition. According to three women in my support group, their physicians were dismissive of their concerns. Patients need validation about what they are experiencing, frank discussions about what to expect, plus guidance on how to manage effects. The symptoms are often vague and difficult to describe, but that does not make them any less real. One lady told me her doctor said he “Didn’t believe in it.” Outrageous! Medical literature has presented articles about the impact of chemo drugs on the brain for decades. For example: “The brain is the key coordinating organ that is responsible for every function of our bodies. Cancer treatment side effects also manifest in central nervous system (CNS) toxicity. Recent research shows that chemotherapy agents are, in fact, more toxic to healthy brain cells than to the cancer cells they were designed to treat.” The duration of symptoms varies widely. However, about one third of patients report lasting side effects, ranging from many months up to 10 years after treatments ended.(2)
If you’ve had or are having chemotherapy and struggle with daily functions, you understand. In addition to short term memory loss, effects of chemo drugs include the inability to concentrate and to recall words. Studies on patients undergoing cancer treatments show the majority experience some difficulties with either the speed of processing information or recall. This is true for most types of cancers such as breast, colon and lung. Most patients do improve over time. In fact, sometimes brain-fog dissipates soon after treatment ends, and many people improve significantly in a matter of months. Nevertheless, before chemotherapeutic drugs are administered, patients should be informed of the possibility of long-term effects.
Statistics about long-lasting side effects are borne out by the patients I meet who say after three years or more they still cannot think clearly when doing routine functions such as balancing a check book. Most share that they were not told how seriously their thought-processes could be impacted. Some can’t even find the words to finish a sentence. One lady recounted how her family worries she is getting early-onset Alzheimer’s. Even if patients are informed about possible cognitive delays, I don’t think it is emphasized enough. If patients had a conversation with their oncologist about expectations before treatments began, strategies could be put in place for minimizing the effects. I was never given any advice about what to do to improve brain function. For example, I did not know “cognitive therapists” existed until another cancer patient told me they might help. This situation highlights the need for a team of experts to inform caregivers and help patients navigate post-treatment problems.
Recent research demonstrates cardiovascular exercise is helpful for brain repair, even after an injury. Thankfully, right after chemo and surgery, I began exercising. I walked daily because my surgeon told me exercise promotes healing. It never occurred to me my brain could also benefit. Exercise drives brain repair by stimulating the growth of new neurons. These facilitate connections between brain cells. Thus, cognitive resilience improves.
Another way you can improve your brain’s functioning and speed your recovery is by getting adequate sleep. Sleep is restorative. Chronic sleep deprivation prevents brain regeneration and reduces cognitive function. The last thing a cancer patient needs is to have their already-compromised brain functions further reduced. Also helpful is to exercise your brain by doing puzzles, playing an instrument, or working on a project. (3) Until your fog lifts, plan ahead with simple practices to help you navigate more successfully. Write down everything! Find a small notebook you can easily carry or use your smartphone and make to-do lists, reminders about events, and appointments. Get a 7-day pill organizer so you can see if you took your vitamins that morning. Don’t be shy about pasting sticky-notes where needed. I put ones on the refrigerator, my computer, and bathroom mirror—do whatever works to jog your memory. Patients I’ve talked to have difficulty multi-tasking, so try to limit your focus to one task at a time. No sense in adding frustration to challenges. Give yourself more time, and with patience, much of your brain-fog may lift. Remember to be kind to yourself.
Reflection:
1. If you haven’t started chemotherapy yet, how could you organize your life to be able to navigate easier after treatments? For examples: Is your bill-paying system efficient? Is your desk or office organized? Do you have important information written in one place in case you forget a pin number or password?
2. What exercises could you start (or continue) now to help your body and brain heal quicker?
(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5539816/
(2) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5539816/
(3) https://www.webmd.com/cancer/manage-chemo-brain#1