Is there such a thing as Aromatase Inhibitor brain???
To anyone out there,
Is anyone else having problems with memory, concentration, and/or focusing on Irimidex (Anastrozole)? I feel like I'm suffering "brain fog" on this medication all the time. Plus hot flashes that impair sleep. For those of us who only did AI's, is there such a thing as "aromatase-inhibitor brain"? And do these side effects go away after discontinuing the medicine? If your answer to this question is "yes", how long did it take you to get back to normal? If not, how long ago did you stop taking Irimidex (Anastrazole) ? I would really appreciate any input or help with these questions. Many thanks.
Every 8th (Lowered QOL brought to you by Anastrozole.)
Comments
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I would be interested to hearing responses as well.
Patty
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Hi girls. Yes there is definitely a change to some with these medications but it's due in part to the lack of oestrogen rather than the drug itself. As your body gets used to the lower oestrogen in it, the forgetfulness and disassociation will ease as will the hot flashes which in turn will improve your sleeping.......it may take six months or more but don't lose hope it does improve.
Hope this helps a little.
Love n hugs. Chrissy
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I was on exemastane (aromasin) - another AI for 6 months. I'm also on zoladex. But notice my memory especially short term is really bad. Someone could tell me something today and then say it again tomorrow. Once they jog my memory I remember them telling me it originally but if they hadn't have reminded me I would have completely forgotten. Like a blank space. It'ssuch a strange feeling and I want to kick myself sometimes for forgetting. My oncologist has told me there are oestrogen receptors in the brain that help with memory and since AIs wipe oestrogen out, this is what causes the memory loss
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I've been on AIs for 4.5 years now. As long as I get good sleep, my memory is almost what it was before treatment. But if my sleep has been disrupted for more than a night or so, I feel the effects. I think those with hot flashes, pain or other SE that disrupt sleep probably have harder times with the memory issues. Certainly I do. So I'd suggest tackling sleep issues as one of the steps to moderate memory problems. I sleep better if I've exercised that day, almost regardless of what else might bother me.
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Hi All,
Thank you all for writing. I just want to say to chrissyb that I do believe your explanation of low estrogen as the cause of the "brain fog" I've been experiencing, However, I do NOT seem to be "getting used to it" or "adjusting to it". I feel the effects of this drug as strongly now (2.5 years in) as I did when I first started taking Anastrozole. This has been extremely frustrating for my QOL. I actually stopped taking it for a few weeks, and thought I noticed some improvement in my cognitive dysfunction but then my mother, who also has breast cancer, was dx'ed with bone mets (rib, skull) which raised the fear factor in me to a point where I felt I had to go back on the medicine. Now the brain fog has returned worse than ever and I can't help but feel I'm being forced to choose between a poorer quality of life vs. a recurrence that could lead to no life at all.
Every 8th.
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In two words: H*LL yes.
Seriously, I had mental issues bad on Arimidex but it seems to have cleared up on Aromasin. For all the time I was on Arimidex, I could not think of words in my lexicon--easy words--I simply couldn't recall them quickly. And I felt distracted, lost, forgetful, etc. Not to mention egregious mood swings and not in a good way.
It could have been a false cause--perhaps my chemo brain cleared up about the time I started on Aromasin--but Arimidex was an awful drug for me in so many ways, I blame it for brain fog too.
Claire in AZ
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Thank you so much claireinaz! If you don't mind my asking, how long were you on Arimidex and how long after you got off of it did you notice any improvement in cognition? Maybe I should try Aromasin. It's the last AI I haven't tried yet.
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Hi every8,
I took it for about 18 months. I threatened my MO that I was going to just stop completely after 18 months of struggle, and she said she wanted me on "something", so she rx'd Aromasin. I've been on it now for over a year...and it seems that the SE from Arimidex resolved themselves right away, along with my brain slowness.
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I have not particularly noticed cognitive impairment due to anti-hormonal therapy but that may also be because I experienced surgical menopause at 45, nine years prior to diagnosis. That said, I have participated in a study through the University of Chicago on cognitive impairment among breast cancer patients, linked below. I am hoping that this study brings to light some of the issues that so many experience.
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http://www.breastcancer.org/research-news/20131014...
Above is a link to a BCO article entitled "Chemo Brain Could Be Hormonal Therapy Brain".
Personally, I've had some problems with word recall and working memory on both tamoxifen (and no chemo) and letrozole (after taxol). I have decided to accept it calmly and carry on.
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I do sometimes get momentarily forgetful about certain words, names of minor celebs, and even sometimes names of people I haven’t seen in a year. I also notice I sometimes forget a word or a line or two of one of my own songs, having to substitute new ones before I sing them—but once I start singing, my brain’s muscle memory brings the original lyrics back to the fore. Fellow baby-boomer singer-songwriter pals of mine refer to it as “Stageheimer’s,” and many of them have gotten a program for their tablet computers (mounted on mic stands) that will scroll lyrics & chords for them. If I can get the stupid mic stand adaptor for my iPad assembled (the screw holes & threads don’t fully line up) I might try that. Beats hauling around a music stand and binder with lyrics printed in giant fonts. (Too proud to do that).
Anything that reduces the estrogen in your body (for men, testosterone) is going to produce effects associated with aging. Maybe it shortens the telomeres on your chromosomes? Not sure about the biology behind it.
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ChiSandy,
You are demonstrating something that educational researchers have learned. Students remember material better if it is sung as lyrics. I can only order the ABCs by remembering the childhood tune. I don't know if this has been studied in those of us post-meno.
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I was particularly concerned about word recall loss, so I made a point of playing word games. Some of the games are just against myself, like finding as many words as possible out of a block of letters,. But playing against other people in Words with Friends has given confidence that I still have a very good vocabulary.
Name recall is another matter. I've always been bad at that, and now I'm terrible. It's "use it or lose it" so it's people I haven't seen in a while. I gush over them until their name comes to me.
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Thank you everyone for your valuable input and thank you ShetlandPony for the link. I am in the process of talking to my onc and am planning to get off this med as soon as I can. It's just a matter of when at this point.
Every8th
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Every8th, I'd say that now is the time for making sure you are addressing the whole person, and recognizing the mind-body connection. As doxie suggests, do make sure you are doing everything you can to get proper sleep and exercise, as these two things do help with cognitive function. Also address any stress, PTSD or depression, as they can negatively affect concentration and focus. Use practical helps like planners, and reminders in your phone. Be kind to yourself. When you have done all you can, then ask yourself if you can finish your course of the drug or not. And as Claire suggests, ask about trying Aromasin, or ask about trying tamoxifen, which is not an aromatase inhibitor.
Like Nancy and Sandy, I find that names are the most likely words to go missing when needed. Once I heard a comedian talking about menopause and one of her lines was "loss of nouns". It's so strange. I have been able to learn a new language while on these drugs, learning mostly through songs. I can still get a good score in Scrabble, still read at a high level. I just can't always name a person, a plant, or a place when I want to.
Lol, Sandy. I guess an iPad is cool but a large print music book not so much.
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I've always been addicted to crosswords—the harder, the better. NYTimes' Saturday crossword, though smaller than the large themed Sunday one, is my favorite conventional-style one. I love good acrostics too—in which you fill in numbered and lettered blanks of clues and then transfer each letter to the appropriate square in the grid. The grid is an excerpt or quotation from a written work. When done, the first letter of each clue's answer will spell out the author and title of the quotation. Again, the NYT has the best ones (though it's too quick and easy doing them online because it's like “Wheel of Fortune," where the letters fill themselves in on the grid when you type the answers and vice versa). I like American cryptic and Puns & Anagrams crosswords too. Word-find and jumble puzzles are too easy, and Sudoku makes my eyes cross—I've always stunk at math. Numbers don't thrill me.
But my absolute favorites are diagramless crosswords—you're presented with regular crossword clues but a blank grid. You have to figure out where the words go. Some anthologies give you the starting square, others just tell you whether there's “regular" symmetry, left-right symmetry or none at all. (If symmetry isn't mentioned, you can assume “regular" symmetry). There’s a variation called “diagramless fill-ins” where all the “E”s in the puzzle are filled in and the clues are just lists of words. You are given only the starting square and sometimes the first word—then you’re on your own.The toughest, of course, are those where you have to figure out where the first word starts, with no other hint. Those are the only ones I must do in pencil. (Crosswords printed on good paper are how I use my favorite fountain pens and inks). The only ones that truly exasperate me are British cryptics—not just because they're so hard (maybe that's why British tabloids are so dumbed-down, because readers fry their brains doing those diabolical cryptics) but because definitions, idioms, and spellings differ so much from those on this side of the pond. The spellings are least problematic, because so many who post here are Canadian and their spelling has become second-nature to me. It’s the slang & idioms that do me in.
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I definitely suffered brain fog while I was on arimidex (two year). Because of joint issues, I switched to tamoxifen probably a year ago. Also a year ago, I was diagnosed with sleep apnea and now a CPAP machine keeps my airway open while I sleep. Joint pain is gone, sleep is better and brain fog is gone. Arimidex or sleep deprivation? One or both? Do speak with your onc about changing meds and consider whether sleep quality or quantity could be a factor.
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Ihad the same experience as claireinaz. I was anastrozole for about 7 months. My word recall got so bad and I felt really thick brained to the point I was convinced that I had Alzheimers, which runs in my family. On top of that I felt flu like all the time and was exhausted. My MO switched me to exemestane after a three week break. Except for occasion word recall problems I am so much better.
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I've been on Arimidex for 4 years. All of the SEs have gotten better for me over the years - especially night sleeps, waking up, etc. But it took a good 3 years for this to happen. Brain fog - yep, get that sometimes. But I am much better than I was. SEs can improve even years later!! My joint pain is much improved - I still have it, but I can walk. When I first started it, some days I couldn't barely walk or go up the steps. I thought I would have to move from my 2 story house. But it is much better now.
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I think it's so incredibly interesting that each of us responds differently to different AIs. But it also troubles me that because we are so unique in that respect, I wonder if we'll ever find a way to treat bc for all of us.
Anyway--happy Sunday, ladies. Glad you are all here with me, since my oncology check up looms end of this week, which always serves to make me feel uneasy and isolated.
Claire inAZ
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I will be thinking of you claireinaz and hope the appointment goes well.
Best,
Every8th
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Thank you, every8th.
Sometimes I think knowing too much isn't a blessing. Had two friends who (one with ovarian c and the other with bc) went to a routine checkup that ended up absolutely not routine. And so I am scared every time.
Claire
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