Earlier this year, I wrote about how various cancer organizations and oncologists viewed chemo brain, and I described the  Five Step Program for Chemo Brain Recovery that I developed and used as a chemotherapy patient. It's included below this month's blog.

Since writing the May blog, I've given more presentations on chemo brain, continued various forms of research, and began developing some tools for chemotherapy patients after therapy.

I've come to several conclusions:

1. People are frightened by chemo brain, because they feel that they have lost a part of their identity and fear that it may never return.
2. People feel invalidated by professionals and organizations who don't take their symptoms seriously or who are not sure if chemo brain is real.  This compounds their fear.
3. The most prominent cancer organizations still minimize the problem of chemo brain, if they recognize it at all.  The "workaround" or accommodation-type suggestions that include trivial advice such as making lists, and enlisting the help of family and friends, lead chemo brain sufferers to become hopeless: the implication is that there is no cure or that only the passage of time will help.

Fear of Your Own Brain.

The closest I've ever felt like an amputee was the morning after my bi-lateral mastectomy.   Considering that my mother died from breast cancer and wanting to be able to check for even the smallest lump, I had decided not to have reconstruction.  So I woke up without "the girls."  It was an odd feeling, a mix of relief and loss.  

The realization that your brain has suffered damage from chemotherapy is different:  the mix is of alienation, fear, and loss.  I was aware that my brain had changed, and therefore felt alienated from my own self.  Fear crept in gradually and served only to increase the anxiety I'd had since beginning cancer treatment.  And the loss: I had lost something vital and I was struggling to get it back.

Fear Can Give Way to Hope.

Thankfully, I had studied the brain and cognition, and began to believe that I could take steps to regain what I had lost.   Those who attend my presentations know that I emphasize REPEATEDLY  the concepts of neurogenesis (the ability to grow new cells in the brain) and neuroplasticity (the ability to rewire the pathways for better functioning).   As we age, neurogenesis becomes increasingly dependent upon exercise.  It is as if our bodies are signalling this message to the brain: "Look, I am a viable being, so I need new cells to keep me functioning proficicently."  I call this the viability cycle.  Inactivity results in loss of viability.  Chemotherapy-induced fatigue can be extremely harmful, because it can lead to decreased activity.

Nutrients, such as folic acid (needed by the brain to create new cells) and lecithin can make a great difference in the brain's recovery, neurogenesis, and energy.  Repeated mental exercise results in new pathways-- like relay systems or long rows of corn-- from both new cells and old.

Knowledge helps belief in recovery, which, in turn, sets recovery in motion.

The Danger of Invalidation 

Professionals and family members can unwittingly impede a patient's recovery, by minimizing symptoms, and by suggesting workarounds and memory aids.    The latter indicates to patients that their condition is permanent and can only be treated, not improved.  

Invalidation is unintentional, but very harmful.  It's based on an old consensus about cognitive impairment, and not on a patient's individual case.  My own strategy was just to ignore any invalidation that occurred, not to resent it, and to visualize my recovery more frequently.  

Assessment and Recovery Strategies

I'll be posting more about these later this month.  You can start by taking the quick self-assessment to determine the severity of your impairment. A free online IQ test can bring comfort that you "still have what it takes" even if tasks take longer to accomplish.

I wrote an eBook that you can use as a manual to follow the five step program, described in the May 2009 paragraphs below.  I've also developed a special audio CD that helps to reduce anxiety and increase a relaxed, but focused, mind.  The CD will be available soon. 

Ebook ordering information is available by clicking here.

Additional information (menus, meals, and supplement information) is available in the Articles section of this site.  If you click on "Articles" in the navigation bar, you'll have access to the entire list of articles.

May 2009

Last night I spent several hours poring over professional and academic articles related to chemo brain. Confronted with so many conflicting messages and agendas in the medical and research community, I felt confused and in a fog.  It felt as if I was  having chemo brain all over again!

It's possible that some researchers have preconceived notions, or seem to think that chemo brain exists before chemotherapy, and may be due to the cancer itself.  Since the reports I read did not explain the tests used to measure mental performance, it's difficult to comment on those findings. 

A conference on the topic was held in Italy a few years ago to discuss the issue, but, seemed to "muddy the waters" more than ever over methodological issues. 

An article in The Oncologist published in December 2008 presented a comprehensive overview of neurotoxicity (literally, poisoning of the brain) from chemotherapy and radiation.  There is no doubt that chemotherapy can have a profound, negative effect on the brain.   How that effect translates into actual thought and behavior problems varies as much as people do.  The challenge now is to help people who have had chemotherapy and are still suffering from the damage. 

Debating about issues of methodology clearly does not help the people suffering today. Neither does remaining silent about side effects.

Here's what the American Cancer Society has to say:

Retrieved from: http://www.cancer.org/

Here's what the American Cancer Society has to say:

Retrieved from: http://www.cancer.org/

For many years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they notice before, during, and after chemotherapy. We don't know its exact cause but this mental fog is commonly called "chemo brain." Patients have noticed this mental fog for some time, but only recently have studies been done that could start to explain it.

Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.

Some people report having these symptoms even before they start treatment. Others report it even though they have not had chemotherapy. Still others notice the problem when they are getting hormonal treatments. So the term "chemo brain" may not be completely accurate, but it is the name that most people call it right now.

The author of the above article did a fine job of minimizing the conflicts about chemo brain and suggested simple strategies.

My recommendation, based on years of helping people to restore or improve their brain's performance is an all-out assault on the debilitation we call chemo brain.  Cancer survivors and their families need help now, not years from now when the research community reaches agreement (which they never do).

Step 1: assess what types of impairment exist and obtain a reading on the severity of the problem.  I've developed a simple, fast, self-assessment that will help cancer patients and survivors understand more about the changes since beginning treatment. 

Step 2 is to decide which areas need to be addressed first: memory, processing speed, decision-making, simple math, or navigation.

Step 3 is changing the diet: eliminate anything that has any evidence of causing disruption in your brain cells.  This includes artificial colors and sweeteners, and flavor enhancers such as MSG.  You do not have to be concerned about the scientific debate on this topic; the safest approach is not to take the risk.  You must also eat a diet that helps your cells and the chemicals in the brain called neurotransmitters.  I could write pages, and will add more on this in another blog entry.  Simply put, eat more eggs, mercury-free fish, raw greens, fresh fruit (mostly blueberries and dark fruit), and small amounts of whole grains.  Dietary supplements can also be a great help.  I used them myself.

Step 4: get physical exercise, because this stimulates the growth of new brain cells.   The research I've read indicates that at least 30 minutes 4 times per week is needed to stimulate new brain cell growth. Make it vigorous!

Step 5: do mental exercises, because they can reinforce existing neuronal pathways that may have been damaged during chemotherapy.  It's best to match the type of exercise to the problem you are experiencing, and not just try to do crossword puzzles.

I'll be blogging more later, trying to stay sane myself in view of all (and much of it needless) debate on this topic.

Have a wonderful, clear day and stay in touch.

If you would like to contact me directly, please email me at

susan.hardwicke@vabion.com