By Randy Hillard, MD
I was not sure whether or not I believed in Chemo Brain before I started suffering from it. Chemo Brain or “chemo fog” was first described by breast cancer patients receiving chemotherapy. The symptoms are mainly trouble concentrating and trouble with short term memory. Initially, most doctors did not believe in Chemo Brain. However, over the last five years, there has been a lot of research into cognitive functions in chemotherapy patients, and nearly all doctors now know about the condition. Stomach cancer patients are at risk for Chemo Brain just like every other cancer patient. Fortunately, only about 20% to 40% of chemo patients get serious symptoms. These are the symptoms of Chemo Brain:
Symptoms: (Taken from the Mayo Clinic website)
· Being unusually disorganized
· Difficulty concentrating
· Difficulty finding the right word
· Difficulty learning new skills
· Difficulty multitasking
· Feeling of mental fogginess
· Short attention span
· Short-term memory problems
· Taking longer than usual to complete routine tasks
· Trouble with verbal memory such as remembering a conversation
· Trouble with visual memory such as recalling an image or list of words
Causes: Although the name is Chemo Brain, chemotherapy is probably not the only cause. Other causes that may contribute to Chemo Brain may include radiation, vitamin deficiencies, malnutrition, depression, and other physical illnesses such as anemia.
My Experience: I was diagnosed with stage 4 stomach cancer in December 2010. I received Oxaliplatin for seven cycles during early 2011 and radiation therapy to my abdomen. I have been getting Herceptin infusions every three weeks since early 2011, along with Xeloda over the same period. I might continue to receive the Xeloda and Herceptin indefinitely. I missed eight months of work while getting treated. Neither my wife nor I noticed that I had problems thinking during this time, probably because I was not really trying to do very much other than lie around and complain.
When I went back to work fulltime in September, I noticed that I was forgetting things and sometimes forgetting to do things. In the past, I have tended to measure my self-worth in terms of how smart I thought I was. I also prided myself on how I could “multitask.” I could be talking on the phone, replying to emails, planning for my next meeting, worrying about a patient, and thinking about what I wanted for dinner, all at the same time. Now I found that if I tried to do or think about more than one thing at a time, I was at risk of only finishing one (or neither). Initially, I thought that maybe I was just imagining the problem, then I went into joking about it, and then I went into being almost panicked about it. As a doctor, I was frightened that I might make a mistake with a patient’s care and would have to immediately put myself on disability. So far, I have not made any real mistakes, but only because I now check everything I do at least four times, rather than the twice like I used to do. In addition, I sometimes have to go back and ask patients questions that I forgot to ask initially. Needless to say, this has slowed me down and decreased the number of patients I can see in a day.
I think that my forgetfulness and inattentiveness have increased over the time that I have been on chemotherapy and that it is still continuing. My wife has told me that I was acting like a fool around the house and asking her to repeat things over and over (which I have had a tendency to do anyway due to my poor hearing). Initially, she did not believe that I had a real condition and did not always have a lot of sympathy for me. At home, but not at work, I have tended to start projects without really having thought them through, and I have occasionally said things that, in retrospect, just did not make much sense.
My symptoms and how they have affected me at work and at home are pretty typical. Most people with cognitive problems during and after chemo worry about their ability to do their work and have to deal with frustrated spouses at home.
How I have Coped with Chemo Brain: Here are some of the strategies I have used:
1. I have stopped even trying to do more than one thing at once.
2. I make sure that I have completely finished one task before starting the next one.
3. I write down or note on my beloved iPad everything I promise to do, or realize that I have to do, and even things that I want to do.
4. Whenever I have what I consider an insight I write that down too.
5. I have accepted that I need to give myself more time to do everything.
6. I have stored all my internet passwords, phone numbers, etc. in a secure (I hope) place that I will not forget (I hope).
7. I try to leave my wallet, keys, hearing aids, and glasses in the same place every day, although, needless to say, I sometimes forget to do that.
8. I have bought an extra pair of glasses and an extra set of keys.
9. I have adjusted my Facebook privacy settings (probably a good idea anyway) in case I post something really stupid.
10. I double check all my outgoing emails twice to make sure that I am sending them to the right people.
11. I have found that the internet “autocorrect” functions can be both friend and foe. My spelling has deteriorated, and it helps with that. It also makes some incorrect changes, like having changed the name of my oncologist, Dr. Zalupski, to Dr. Alaska.
12. I have gotten protective containers for my iPad and iPhone and gotten the insurance for them because I sometimes forget I have them and drop them.
13. I have a list of what I need to do every day and review it every morning.
14. I also have a list of what I need to do every weekend (like filling up my weekly pill container).
15. I have a running list of projects I am working on with what I hope will be the completion date, and I remove each task when finished.
16. I have printed out some articles about the condition and had a heart-to-heart with my wife about what my problem is and how I was trying to compensate for it. I knew that conversation had gone well when she said “Oh, I had something like that when I was going through menopause.”
17. I have tried to be more patient with myself and tried to keep in mind that my worth as a human being was not so dependent on being “productive” or “sharp.”
18. There probably were other coping strategies I have used, but (sigh) I cannot quite recollect them right at the moment.
Other possible treatments:
1. Some people have found that systematic relaxation or meditation help. These have not actually helped me, but maybe I am just not doing them right.
2. Some patients have found that Ginko Biloba and Vitamin E help. I have not tried them yet.
3. Since the symptoms of Chemo Brain are similar to those of attention deficit disorder (ADD), treatments used for ADD often help, such as Adderall and Ritalin. I have not tried these either and you should always consult your doctor before taking any medications or supplements.
4. Some people have found that Aricept , originally used for Alzheimers or donepezil, originally used for excessive daytime sleepiness may help. Have not tried. Do not intend to try. Again, this is not medical advice, so do consult your doctor!
5. Exercise, both physical (such as walking) and mental (solving puzzles) may also help.
Prognosis: Some people get over these symptoms shortly after treatment. Others have residual symptoms for two years or more. Some people, even ten years later, report that they still have difficulty thinking more so than they did before treatment. On the positive side, practically everyone is able to function OK both at home and at work if they follow some of the suggestions above, and very few people need to go on disability for the condition. A supportive family, as always, is crucial. If you have loved ones who just do not understand what you are talking about, ask them to read this article!