Extract.....

This is something that is a relatively new area of research, and it's
chemo brain. Everybody knows what that is. How many people know
personally what that is? Well over half the room, men included. Did
anyone participate in the Y-ME survey that was conducted on the
Internet recently? This was a very exciting thing. Six-hundred
thirty-five people responded to this survey, and that was exciting
because it showed the importance of this topic. It's asking, what type
of thinking problems, if any, did you experience after completion of
your cancer therapy? Over 61 percent of people reported reduced memory.
Over half had difficulty concentrating. A lot of people reported
difficulty multitasking. We even had a lot of people reporting that
they couldn't do math. I wouldn't want to baseline that on how math is
ordinarily speaking. Reduced language skills were also reported by over
a quarter of the people who responded, and over half of these people
said this phenomenon had a pretty significant impact on their life. It
wasn't a minor deal, and it lasted longer than a year after treatment.

This is something that is not only a big problem. It's extremely
prevalent, and it's long-lasting. It's something that's not going away.
This is a huge area for research. What's been done? First of all, chemo
brain, does it happen for people who just get radiation? Does it happen
for people who get hormones, hormonal treatment and surgery? Does it
happen for people who don't get any additive treatment and get surgery?
The answer is, yes. So chemo brain is not exactly the right term for
it. There has been a lot of research focusing on chemo. One problem is,
we don't know what causes it. It could be hormones. There was one study
that linked chemo brain, or the phenomenon of having difficulty
concentrating, with menopause.

There has been a lot of research that has been confusing. They've been
able to describe a little bit more about the problem and validate it,
so people don't think they're crazy and don't think it's just them. The
doctors also are listening to them when they're describing this
problem. Among some of the research, women with breast cancer receiving
chemo are more likely to have memory, concentration and language
problems than those not receiving chemo. The presence and severity of
cognitive problems are related to the length and dose of chemotherapy
regimen. That leads a lot of strength to the idea that it might be
chemo-related, that it might not be because of some other things.

Our group is doing some research in this area at CORE [Center on
Outcomes, Research and Education at Northwestern University]. One of my
colleagues, Lynn Wagner, is involved in this study that seeks to figure
out what's going on with this problem, describing the nature of it, the
extent of it, by talking to patients, oncologists, using patient
self-report batteries, extensive neuropsychological batteries, and even
functional MRI to see what's going on in the brain when somebody is
having difficulty thinking. One of the problems in the research right
now is that everyone's measuring it differently, so when you think
about all those studies, you can't really compare them. We need to come
to a consensus on what we mean and how to measure it. Hopefully, this
will lead to an intervention that will help. Measuring something
accurately is the first step in trying to find ways to intervene.

In the interim, these are some hints and tips that have been
established both in literature and anecdotally. I was able to find some
of this stuff in the Facing Forward series that's produced by the
National Cancer Institute [Facing Forward: Life After Cancer
Treatment]. They produce a wonderful set of materials, both on the
Internet and in paper form, and they're free to anybody. Some of the
suggestions that have emerged from the research are: getting a notebook
or pocket calendar; putting small signs around the house; grouping long
numbers or lists into chunks; talking yourself through something that
you need to do; learning relaxation skills; repeating what you want to
remember; not to be mad at yourself and berate yourself.

Research has shown that the more stressed and anxious someone is, the
less able their brain is to encode what they're experiencing and trying
to remember. Those memories never get in there in the first place, so
if you can learn to decrease your stress and anxiety, that may free up
more of your psychological process to be able to have memories stick
and to be remembered long-term.

I used to work with a woman who had been diagnosed with breast cancer
and had extensive treatment. She had a lot of difficulties with chemo
brain, and she devised a system of sticking out her finger every time
she had to remember something, and that worked for her. Because she
would be upstairs, and she needed to go downstairs and get something,
she'd say, okay I need to get my book. I'm going to walk downstairs and
by the time I go downstairs, hopefully this would remind me that I need
a book. The problem came when she needed her book and her blanket and a
magazine and the cat. So this can help in some ways, but I think you've
got to devise methods that really work for you.

It's extremely important not to berate yourself and be angry or
frustrated with yourself when memory loss happens, when language
problems happen, because they're going to happen. If you're angry with
yourself, it actually makes it worse. So being kind to yourself,
forgiving of yourself, and putting small signs into your life to help,
and also giving people the expectation that this is what I'm dealing
with, you're going to have to tell me this 40 times - setting
expectations not only for other people but for yourself.

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