I seem to be walking around in a daze. I'm taking my CML medication but I can't remember even simple things. Do I have chemo brain or brain fog?

"Brain fog" and "chemo brain" all refer to the combined conditions of forgetfulness, confusion, difficulty concentrating and difficulty finding the words one wishes to use in speaking, that are experienced by patients undergoing treatment for any type of cancer, including treatment with Tyrosine Kinase Inhibitors for CML. Although the mechanisms differ between cancer treatments used, patients across all cancer types may exhibit these frustrating conditions. This cognitive disorder can be triggered or worsened by fatigue, insomnia, overexertion, overstimulation, anxiety and medications including TKIs and those used for symptom management.

Some patients have found that there are some very practical and achievable changes to their normal routines, that may produce improvements in brain fog.

These include:

Activity Level: Take rest breaks, pace yourself, rest prior to activities which require mental and physical exertion.

Activity Time: Recognize the time of day that you are at your best cognitively, and also when you are at your worst. Rearrange activities that require the highest levels of concentration and energy, for the times you’re at your best.

Activity Organization: Create routines for things that you may not have needed in the past. Habits will form quickly as you observe the routines and this will allow your brain to take one more thing requiring cognitive work, off its list of things to do. Where your keys, your wallet, your cell phone are, will become actions of habit instead of thought.

Controlling Stimulation: Create your master list and then prioritize it. Do one thing at a time – multi-tasking isn’t everything it’s lauded to be. Reduce noise/sound, surrounding activities and distractions.

Observe Patterns: Be vigilant in noticing patterns in the occurrences of your brain fog symptoms. Look for activities, foods, and situations which make your symptoms better or worse. These patterns will be important clues for developing strategies to control and manage your symptoms.

Watch Medications: Discuss your medications and their possible interactions with each other, and with foods. These interactions may be producing or worsening some of your brain fog symptoms. Your pharmacist is a great resource in doing this! 

Worsening Symptoms: If your symptoms persist and your life is being affected in serious ways, it may be time to discuss options with your CML physician. Is there a change in dose or schedule that might help? Is there another treatment option that might be effective without the brain fog side effects? Are there clinical trials that might be right for you? It is important to ask and be well informed.

Managing Life: There may be a time when you are no longer able to productively participate in work, school or other daily activities. If you are nearing this moment in time, please consult with your social worker and health care team to consider options for your future. The National CML Society has resources to help get you started in researching your options

Know that the majority of patients who successfully tackle and manage their brain fog, do so in a somewhat “trial and error” approach. What works for one person, may not work for another. Many patients require numerous strategies in order to effectively live their lives in the shadow of brain fog.

We know that this is merely a partial answer to those who suffer with this debilitating condition. But at this time it is the only reliable answer and those who promise otherwise offer interventions that are untested and unproven. Please take care when considering other options and keep your health care team informed of changes you make to your lifestyle including the adoption of any complementary or alternative therapies. Thus far, no therapy, traditional or otherwise, has been proven to prevent or eradicate brain fog. But the search for a prevention and an effective treatment continues and we wll not give up.