Memory and Attention Adaptation Training (MAAT): Finding a Way to Deal with Chemo Brain

So, as I’ve written about in previous posts (here and here) there’s this thing called ‘chemo brain’, and contrary to what you might find when you google it, it doesn’t necessarily go away after you finish cancer treatment. It also has a longer name: Cancer-Related Cognitive Impairment (CRCI).

This can be particularly frustrating for those of us who are expected to perform “as before” (meaning, prior to getting cancer) and yet increasingly fall victim to distractions, searching for words, forgetting things as soon as we’re told them, and in general, wondering whether we’ve now come down with a mix of dementia and ADHD.

You’ll need more than a bouquet of forget-me-nots to navigate post-cancer issues like CRCI. Classes like MAAT can help.

There is help, however, and it’s arrived in the form of a class called Memory and Attention Adaptation Training (MAAT). I had the opportunity to take this 8-week class in Fall 2022 and it recently concluded.

The class is intelligently put together, first showing students the science about what they are experiencing (and that it’s not early-onset dementia!), and then over the next two months, teaching tricks and techniques for helping navigate the new landscape of CRCI.

This includes learning stress management techniques, improving sleep and pacing oneself, making self-care a high priority. But the majority of the class was devoted to learning how to use methods such as rehearsal/repetition, situational awareness, scheduling, distraction reduction, active listening and imagery. These help us maintain focus and retain information while reducing overwhelm.

It takes more than littering your desk with post-it notes. We need to create an environment that supports memory storage and distraction reduction.

I took the class through SHARP Hospital in the San Diego, CA area as part of their second cohort. It was taught by a clinical oncology social worker (herself a breast cancer survivor) and a speech pathologist, and their expertise made the class even more worthwhile. While the first cohort was in person, we in the second cohort had the benefit of taking the class via Zoom, which helped with accessibility, especially for those of us who are still working.

And a number of us there were already about 3-5 years out of treatment, which dispells the notion that chemo brain only lasts during treatment. Our cohort members’ ages ran the gamut from early 30s to well into retirement, illustrating that CRCI can show up in any cancer survivors regardless of age.

Realizing that this is affecting many more people that have been reporting symptoms, the SHARP Health Care system has opened the classes to individuals in other health systems in the San Diego area.

No matter where you live, if you are a cancer survivor experiencing some form of cognitive impairment, I urge you to 1) tell your oncological team (They need to know this is happening!) and 2) ask them about the availability of MAAT classes in your region. MAAT is not currently being offered widely, so please make your needs known so that this service can be expanded to those who need it.

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Curiously enough, one of the first assignments we had in the MAAT class was to work with gratitude – yes, it really does help! Such a perfect practice to begin at this time of the year! Happy Holidays to all! ❤

Working Out the Brain Fog

So if you needed yet another reason to exercise before, during and after your breast cancer treatments, I’ve got one for you.

A recent study in the Journal of Clinical Oncology (Salerno et al., 2021) found that early stage (I-III) breast cancer patients who were meeting the US minimum physical activity guidelines both before and during their chemotherapy displayed better cognitive function then did those patients who did not, and the effects were apparent both at the time of chemo and also six months after its completion.

Cognitive impairment is a relatively common complaint of breast cancer survivors–and can be improved with exercise.

This follows along the lines of other things we already know about exercise and cancer, such as increased survival rates and reduced rates of recurrence. It’s not a big stretch to say that exercise (and for the purposes of this post, I’m referring to the US national guidelines) is possibly one of the best things you can do for yourself, whether you are already a cancer patient or don’t want to become one (again).

What are these guidelines?

It’s suggested that adults do (1) at least 150-300 minutes per week of moderate-intensity or 75-150 minutes per week of vigorous-intensity aerobic physical activity, or some combination of the two intensities, the more the better; and (2) strength training activity involving all the major muscle groups at least two days a week at moderate or greater intensity (see specifics at Physical Activity Guidelines for Americans, 2nd edition).

Notably, similar guidelines hold across age groups and health conditions, with some modifications, although what exactly constitutes moderate to high intensity for different people will vary according to their conditioning and abilities. Take home message: If you can’t meet the guidelines, do what you can. It will still benefit you. The worst thing you can do is nothing.

The benefits of exercise for cancer survivors have been well-documented.

While there’s been a considerable amount of research done on the benefits of exercise as a whole, we’re only now beginning to focus on cancer patients and survivors as the test subjects. And new research is being conducted on different aspects of exercise to learn what effects they might have on cognition.

I’m going to be watching for the results of two clinical studies regarding exercise and cognition of cancer survivors. Both are currently recruiting participants.

The first, being conducted by the University of California, San Diego, is entitled “I Can! Improving Cognition After Cancer” and will be a randomized trial that examines whether physical activity improves cognitive function. You can read about it here: A randomized trial of physical activity for cognitive functioning in breast cancer survivors: Rationale and study design of I Can! Improving Cognition After Cancer, funded by the National Cancer Institute. Want to learn more? Go to https://clinicaltrials.gov/ct2/show/NCT04049695.

The second, conducted by the University of Pittsburgh and entitled, “Aerobic Exercise in Improving Cognitive Function in Patients with Stage 0-IIIA Breast Cancer”, will explore the effects of aerobic exercise specifically and will involve neuroimaging and the examination of pro-inflammatory biomarkers. You can read about it here: https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCT02793921&r=1. Again this is funded by the National Cancer Institute. Interested in learning more? Go to https://clinicaltrials.gov/ct2/show/NCT02793921.

If you’re not exercising yet, the important thing is not what physical activity to choose, it’s to make the decision to begin.

If you have any interest in participating in either of these studies, contact info for the research project is available above in the posted clinical trial links.

So you might be thinking, “I can barely deal with the diagnosis…and you want me to EXERCISE???” I promise you, physical movement will only make you feel better. However, if you don’t have an established exercise routine and don’t particularly enjoy the experience, consider what you can manage.

We’re not talking about training for a marathon or a powerlifting competition. But if you can do something, ANYTHING, you will still see greater improvements in your cognition–and quite frankly, many other aspects of your physical and mental state–than if you hadn’t done any activity at all.

It is worth it and you are worth it. So lace up your shoes and give it a go.

A Year on Letrozole

Warning: This is going to be a bit of a gripe-fest…

This coming week marks my one-year anniversary of taking letrozole, an aromatase inhibitor designed to reduce the risk of recurrence of my breast cancer by reducing the levels of estradiol (precurser to estrogen) in the body.

Aromatase inhibitors are problematic. Significant numbers of women discontinue taking these medications prior to the planned end of treatment, and this is due mainly to side effects (Kadakia et al., 2016, The Oncologist).

A year into this, I can completely relate. When I was on tamoxifen, the side effects were less well-defined. With letrozole, they’re unmistakable.

Most infuriating are the physical ones, especially the arthralgia (joint pain). I’m an ardent exerciser, regularly engaging in rowing, lifting weights and interval training. Arthralgia puts obvious limitations on my workouts. Maintaining muscle is harder and as a result I need to work out more intensely. So I push it, but it feels like I’m treading water with an anvil tied around my neck. I know that working out and building muscle is going to be tough at age 54, but I question the benefits of a drug purported to lessen the chance of cancer recurrence when it’s affecting my ability to engage in something (exercise) which is strongly associated with a decreased risk of cancer (Cannioto et al., 2020, JCNI). It doesn’t seem to make sense.

No matter how tired I am in the evening, some nights are restless and NOT refreshing.

Another effect of the drop in estrogen is fatigue, which can be intense by the end of the day. Then, okay, I go to bed early, but my sleep quality is hit-or-miss. Sometimes I experience weird “restless leg” symptoms. This is a “gripping” or aching sensation that can only be aleviated by moving my legs. Any position that feels comfortable at the moment soon won’t, and I do an awkward dance as I move around in bed. Not a great recipe for falling asleep. Luckily this doesn’t occur every night, but when it does, it impacts the next workday.

As a side note, I usually take magnesium supplements before bed, not only to aid in muscle recovery, but also to help with sleep. I don’t know what my nights would be like if I didn’t take them regularly, and I’m not willing to find out.

Over time, the pain in my joints and limbs has increased. It’s most pronounced in my fingers, toes, ankles, hips and elbows, and I’m generally most achey as I’m going to sleep and when I wake in the morning. Sometimes it’s bad enough that it wakes me at night–usually a burning sensation in my fingers and toes–but that happens only occasionally.

By the way, in case you’re wondering if that’s bone metastases instead of side effects, trust me, I’ve already thought about that. I’ve also done the obligatory googling, and while I’ll let my oncologist know about the pain at my next appointment, I don’t think it’s metastasis. These symptoms are just your garden-variety letrozole side effects.

One of the most striking physical side effects (that I could actually show to other people!) didn’t kick in until about Month 8 of taking the letrozole, when the stiffness in my fingers escalated to the point where several of them would lock up in the morning. If I made a fist and then attempted to open my hand, a few of my fingers would “stick” and, as I continued to try to straighten them, they’d suddenly sproing open.

I’ve already mentioned the physical fatigue, but there’s a deeper, darker side to this, which I’ve written about previously. The rest of my family — husband and two teenagers — are up and lively in the evening as I’m dragging my sorry butt to bed. I feel a strong disconnect from them. More specifically, I feel old, which is not surprising, since decreased estrogen is associated with ageing. I feel like I don’t belong with my family anymore, like there’s a distance between us. So, I’m taking a medication to help prevent a possible recurrence of my breast cancer, but the price I’m paying for that reduced risk seems pretty steep.

The disconnect from my family makes me feel alone…and old.

Adding to that feeling of disconnect is the sudden drop in my libido. Perhaps this would have been easier to take if I were single, or divorced (which is the direction it sometimes feels this is heading). I’ve already written about the issue here so I won’t rehash all my frustration. Suffice it to say that while sexual side effects are mentioned in the scientific literature and in doctors’ offices, they’re not really talked about from the standpoint of the effect they have on relationships. This is one of those intangible issues that is difficult to quantify and even more difficult to discuss.

There are also cognitive problems that involve (1) concentration, (2) focus and (3) memory. Listen, I need all three of those for work. I cannot express how crippling it feels trying to learn new convoluted financial software when my brain simply refuses to cooperate. Truly, taking a mindfulness break helps immensely, but it simply doesn’t solve the problem. It just keeps me from putting my fist through my monitor.

Ah, yes, irritability. Put that down as another side effect.

This would be me. If I were a baboon. And used the Oracle Financial System.

So I’m a year into letrozole and I’m searching through the scientific literature to see what, truly, are the rates of recurrence for women who discontinue the medication prematurely, and what other factors come into play in terms of reducing risks.

My goal is to get through at least five years of combined endocrine therapy (tamoxifen and letrozole), and I’m already more than halfway there, having finished two years of tamoxifen before I got on the aromatase inhibitor train. I mean, only two more years of this.

Maybe I’ve hit the high mark of side effects and they won’t get any worse? Maybe?

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Note: the side effects I’ve mentioned are not the only ones that occur with aromatase inhibitors. These are simply the big ones for me. Before you start any treatment, make sure you discuss with your oncologist what sort of adverse reactions you can expect and what you can do to mitigate them.