AIs and cognitive function

starwoman

Has anyone else experienced a serious negative effect on their cognitive functioning as a result of taking an aromatase inhibitor?

I have taken anastrozole (Arimidex) for 13 months and am increasingly concerned about my (possibly slightly worsening) memory decline, reduced capacity for new learning and generalised brain-fog. I sometimes feel as though I am wading through a cognitive tar-pit.

I continue to tolerate and/or manage several other side effects. Some side effects have disappeared over time or are transient.

I have experienced ongoing fatigue and 2 brief episodes of very low mood since starting anastrozole. The cognitive deterioration I am referring to is different. Perhaps unsurprisingly, it is reminiscent of the cognitive decline I experienced at natural menopause 10 years ago (and which improved) but it's far more severe.

Research on this side effect appears to be minimal e.g.

http://www.breastcancer.org/research-news/20131014-3

http://www.hoajonline.com/jctr/2049-7962/2/7

http://jco.ascopubs.org/content/32/33/3779.full

I'll discuss the merit of changing to another AI at my next 6 month check-up in September. Meantime, I'd really welcome anyone else's feedback.

Thanks!

doxie

Hard to tell for me. I went from chemo to rads to anastrozole. My cognitive functioning was very poor, I was always tired, and I had no memory for words during the entire time until I went off for a 2 month break after 6 months. I started examestane and my mind perked up on the drug, even from during the break. I still cannot remember words, though.

It's hard to tell what was left over from chemo and rads while I was on anastrozole though.

starwoman

Thanks for your response Doxie - that's encouraging. I have wondered about a switch to exemestane and will ask in September.

I didn't have chemo or rads though I had a few surgeries over 3 years and wondered about the impact of anaesthesia and stress. But this has really just kicked in since starting anastrozole so am confident it's down to this drug.

muska

I have been on anastrozole for about 14 months and have not noticed any cognitive decline. I continue working a full-time job that requires focus and multi-tasking and see no impact from the drug. I would say I feel better now - both physically and mentally - than a year ago when I was still "fresh" after chemo and radiation.

starwoman

Thank you muska and kayb - your reports once again reveal the variation of experiences we have on these drugs.

Recent review articles query individual differences in AI metabolisation and cite conflicting conclusions on the cognitive impact issue. They all seem to agree on one thing: 'merits further research'.

I hope to find that a different AI improves this SE for me (and that >5 years won't be recommended!!)

Thanks again.

mary625

I have a lot of short term memory problems such as forgetting words I'm searching for and thinking about doing something, then going to do it and can't remember what it was. I know for sure that it's the Femara because I've had recon lately, had to go off of Femara and realized the difference. So in that regard, I know it's not permanent. My therapist says that's a good sign...that's of course if they ever allow me off of it. At one point, onc had said he might never stop it for me. I cried the last time I had to go back on it after surgery.
That said, I don't have problems with IQ sorts of things like processing information or being able to do the high-level aspects of my job. However, without a list of tasks, I'd be a goner!

muska

I think there is an important factor we often don't take into account when side effects of treatments hormonals including are discussed, and that is age. Side effects from the same AI most likely will be different in someone who is in the 50s vs someone who is one or two decades older. And as we get older it is often difficult to distinguish between age related issues and medication side effects.

ruthbru

No memory decline noticed; but even before BC, I always lived by the motto "If it isn't written down, it didn't (or isn't going to) happen."

Claire_in_Seattle

Now that I am no longer taking AIs, the thing I notice most is increased endurance when I do cycling and running events. I think that that what helps most with keeping my brain sharp is exercise. So a big reason to do the 5k weekday runs and weekend cycling. Even walking helps. I also do a weights and crunches routine on weekdays.

I have so much going on that I have to keep an electronic calendar, notes, and lists to get it all done. This was true 15 years ago.

Regarding AIs, I will also say that I do have less joint pain now that I am no longer taking them. So while I wouldn't describe the experience as "horrible", I am very glad to be done with the 5 years and on to the rest of my life. - Claire

ruthbru

I was just going to mention exercise too. When I was doing chemo (and being less physically active), I had some 'chemo brain' moments, and I found when I would force myself to go out for a brisk walk & do other exercise (even though I definitely didn't feel like it!!), I was sharper. I don't know if it was because exercise relieved some of the stress I was under, or if exercise was bringing more oxygen to the brain (probably both). If you haven't been exercising, try it and see if it helps. 

starwoman

Thanks Ruth and Claire. I do exercise 4-5 days a week - swimming and walking mainly, occasional gym weight machines - and, you're right, it does help - with everything really. I'll ramp it up a bit and see how that helps.

And too true about the need for lists - I started arimidex at 60 but I'd been relying on diaries and lists for decades to manage a very busy life. I work and am also currently studying (inveterate student all my life and I love learning) so I can certainly function but, over the last year, my mental sharpness has declined, I have to work much harder and more slowly to synthesise and retain information and sometimes a kind of mental fuzziness descends, making concentration an effort and causing me to doubt the accuracy of my perceptions.

I also have similar experiences to those you describe mary625 - not word forgetfulness but that 'why did I come into this room again? 'type of thing. It's good that you have evidence it's not permanent though tough to accept that the drug may be longterm. Using mindfulness helps me somewhat with this one (practicing keeping my mind and body in the same place at the same time!).

I appreciate the encouragement to keep going with exercise and have also just decided to invest some time in improving my current system of organising/reminders - the current one has become too fragmented and isn't helping.

(And great to hear about improvements with joint pain and endurance since you've finished AIs, Claire - looking forward to both of those!)

april485

I feel that my memory is much impaired since taking exemestane. Words are hard to find and things I always took for granted like remembering what my clients were looking for in terms of services after meeting them just once is just not happening for me anymore. I know that I am in a constant brain fog and I also know it is the AI. I took a break from the drug (with MO's blessing) and after a few weeks, I felt like my old self again. This drug is very powerful and affects everyone so differently. I have a lot of side effects from this drug but am reluctant to switch as it is sort of "the devil that you know" kind of thing for me.

Wishing you the best if you try another AI.

ruthbru

Star, try yoga. It is very, very good for centering one's mind and to work on focus. And, if you want some exercise buddies, check out the 'Lets Post Our Daily Exercise' thread on the fitness forum. Claire & I both hang out there. A great group of gals in all stages of treatment & beyond, and at all fitness levels too.

Meow13

Yes I noticed my memory getting worse with anastrozole, I don't think is as bad as exemestane.

starwoman

Here's a recent article on this topic Patterns of change in cognitive function with anastrozole therapy http://onlinelibrary.wiley.com/doi/10.1002/cncr.29393/abstract

It confirms the experiences some of us have and also suggests the exercise route :

Additional research is needed to examine cognitive function across the entire trajectory of AI therapy and to determine whether cognitive function improves after treatment completion. Interventions to attenuate cognitive decline are also needed. Physical activity interventions may be of particular benefit because they are associated with improved working memory, executive function, and psychomotor efficiency in older adults, the very cognitive domains that deteriorate with adjuvant therapy use in breast cancer

And thanks for the reminder about yoga, which I've done intermittently over the years but not for a long time, and the invitation to join the exercise thread.

I'm going to stop researching now as it's feeling like it's edged into 'I want to be right rather than happy'. And will get in some exercise in the next couple of hours ;-). And a heart-felt wish for improvement and good health to everyone wrestling with the side effects of these drugs.

Claire_in_Seattle

Thank you for posting Starwoman. I hadn't seen this recent research. I have exercised throughout this whole time, including all chemo. One thing worth mentioned is that when I started running, my balance improved. Not that it was bad, but noticeably better once I started running. Even better with a bit of trail running. (Stay out of my way when I tear around the office!)

I am not a natural runner, but did more than OK when I did the Cowiche Crawl ten days ago.

Have to jump on a webinar, but wanted to encourage exercise outdoors to get in some uneven walking at the very least. My clinical nurse pointed this out to me about 3 years ago. I suspect I will do the exercise ball while listening to this breaking news about ASCO.

Have a wonderful week! - Claire

Professor50

Personally, I felt like I had serious cognitive issues while using tamoxifen. It is for this reason that I insisted on changing my HT to something else. Before doing so, I investigated a few studies that had been done on these topics and it was clear that there is a link between tamoxifen and cognitive deficits. I found a study that compared tamoxifen and exemestane (compared to a control group). The tamoxifen group did score lower than the controls while the exemestane group didn't. And I found a study showing a small increase in some cognitive measures for an exemestane group vs. controls (and I think this was explained by the fact that exemestane may increase androgen levels slightly). (btw, all of these were studies using objective cognitive measures, not subjective reports.) Anyway, this was enough for me to argue my way into lupron + emestane rather than tamoxifen, against my MO's wishes.

I feel like I am tolerating this combo better than I did tamoxifen. I will say that I think there is HUGE variability around these SEs! I would advise anyone who finds either tamoxifen or one of the AIs intolerable to insist on trying something else. And keep trying!

StrongEnough

Hi everyone. This is a topic after my own heart. Your description of your experiences, Starwoman, seem to match mine exactly

I just switched to exemestane from anastozole yesterday, in the hopes of improving my cognitive function. My brain steadily improved since the anesthesia and chemo and anastrozole, but then it plateaued at too low a level. This has got to work!

starwoman

That's good to know you have found an improvement on exemestane Professor50 - I also came across those studies citing less cognitive impact compared to tamoxifen. Understand about 'better the devil' too april485 - if I can find ways to manage the SEs adequately, I'll stick with my present one.

Best of luck with the change, StrongEnough and will be interested to hear how it goes.

I am going to try more consistent, greater amounts of exercise over the next few months and, depending on how that goes, I may discuss a change in September. I need to focus on exercise anyway for the obvious risk reduction benefits and helping my already osteopenic bones, but sometimes my arthritic hip complains a lot. My bc journey began at the time I had a longed-for breast reduction - one of the things I was really looking forward to was being able to run at last (had been impossibly uncomfortable) but then my hip began to act up. I haven't given up on it entirely, Claire - try to walk/jog/walk a bit and, if I too find that joint pain reduces when I stop the AI, I will be thrilled :-)

StrongEnough

Starwoman, did you switch to Exemestane? I haven't found any improvement in cognitive function - or maybe minimal improvement. Bone pain got worse for a while (more bones, more pain) but it has improved to a tolerable level. The one thing that definitely has improved is my mood, though, which is why I will stay on this AI.

I had extensive cognitive testing which showed definite deficits. Adderall helps me focus but brings a whole other set of side effects, of course. It is necessary to keep me employed, though

cuddyclothes

StrongEnough, here's a link to an article you might find interesting.

http://blogs.cancer.org/expertvoices/2015/10/27/does-hormone-therapy-for-breast-cancer-affect-the-brain/

StrongEnough

Thank you, cuddyclothes! I had not seen that article.

starwoman

Just spotted your post StrongEnough. I decided to stick with anastrozole for a bit longer. I switched from Arimidex in December 2015 to a generic (Activis which seems to have exactly the same ingredients as Arimidex) and haven't noticed any difference in SEs - still fatigue, joint pain, insomnia, hot flushes, cognitive deficit, low mood, thinning hair, dry eyes etc.

That is heartening that you've had improved mood on exemestane. But sorry the cognitive function didn't improve by much. Were you referred for that testing specifically as a result of AI side effect?

I have an appointment with the oncologist in two weeks to discuss the anastrozole side effects - have no idea what her thinking is on switching to another AI. Clearly the SEs are a result of oestrogen deprivation but I wish there was more definitive information on why they vary so much between AI, between brands and between women.

I find the information in that article you posted quite disturbing cuddlyclothes. I'll stay on an AI for as long as I can, hopefully 5 years, but its impact is not trivial.

starwoman

The oncologist I saw yesterday believes there is no evidence for ai-related cognitive impact and that the studies that have been done which show this side-effect demonstrate 'bad science'. Any negative cognitive experience is due to 'stress'.

There was much more but the outcome of this condescending meeting is that I will stay on anastrozole for the time being. I will be having a bone scan because my arthritic hip continues to be very painful (and ai-related joint pain should be gone by 2 years apparently). I'm pretty sure I'll be investigating alternative care-givers after that.

bc101

This has been an ongoing problem for me, but it's so hard to tell if it's from AI's or not. I'm going on almost 3 years with Aromasin. All along, I've complained about memory loss and my providers support my belief that it could be due to the AI. Starwoman - it's interesting that your MO discounted that study - I think I know which one is was and it was posted on this site not too long ago. Perhaps you could get a second opinion?

As for my memory loss, I'm not so sure. Yes, I'm older....but I've always had jobs where I had to maintain an extremely high level of organization. Recently, my memory issues have gotten much worse. After some other symptoms I was having, an ENT did some bloodwork and believes I might have an autoimmune disorder. Another provider mentioned Fibromyalgia, so I have to undergo a series of tests to rule out other things, so....my memory loss could be fibro fog. I also have struggled with depression and anxiety, which we all know causes memory loss, so it's hard to tell which came first - the chicken or the egg. Plus, I've had some extremely stressful events in my life over the past year, so it could be due to stress. My mother has Alzheimer's and my greatest fear is that I'll be a victim of that disease, too, but a recent brain MRI showed all was normal (thank goodness!).

I think that there are a lot of factors that point to memory loss. It COULD be from the AI's, who knows. The only way to tell is to go off them and see if you feel better like others here have done. I'm not comfortable doing that. Ideally, we need to have an understanding provider who is willing to help us and not discount our concerns. Not being believed is in itself a HUGE stressor and doesn't help solve the problem, whatever its cause.

Best of luck to all of you!

starwoman

Wishing you well in your current investigations bc101. I do agree that it can be hard to discern a single cause for some symptoms and, like you, I plan to stay on an AI for the present and will manage and treat side effects as best I can.

The MO I saw dismissed all articles claiming cognitive SEs of AIs as 'bad science' and I backed off so we didn't get to identifying any particular one. Stress for sure has an impact, age and many other factors but my reading indicates that brain cells do have oestrogen receptors e.g. http://www.northwestern.edu/newscenter/stories/201..., and it at least seems possible that knocking out the body's supply of oestrogen might have an impact for some women.

Agreed on the merits of a care-giver with whom you can discuss issues ;-)

bc101

Thanks, starwoman. Interesting article. It certainly seems to point to estrogen as the culprit.

Even with that, I'm not willing to go off my Aromasin. Everyone, including myself, will have to accept me as I am, although I am half hoping that I'll be dx with Fibromyalgia so that maybe I'll have an answer of sorts for my ailments. Although there is no treatment for that at this moment in time, I just want to feel better.

Maybe they need to write an RX for a cruise once a year for those of us on AI's. It could help!

lyzzysmom

I am a computer programmer and found when I started tamoxifen my concentration went. From being able to work my way through a problem my brain would just shut down, like a curtain coming down. It improved after I stopped taking it . I then tried AI but stopped that due to other side effects and decided to take my chances given my age, oncotype ( likelihood of recurrence increased from 8 to 16% without ai), and being osteopeonic