Is anyone else out there suffering with tamoxifen-brain? I’ve heard of chemo brain and suffered it a bit with chemo but I have been on tamoxifen now for 7 weeks and my brain has totally turned to mush. It’s absolutely horrible - I have the attention span of a goldfish, I cannot multi-task, my short term memory has completely gone, I struggle to find words, I cannot even touch type any more. If I want to remember anything I have to say it over and over in my head otherwise I will forget and am forever wandering around the house aimlessly wondering what I am doing.
If I didn’t know better, I’d think I have Alzheimers - perhaps I do, but I’m only 43. Or perhaps I have brain mets, which the other rather more scary thought.
I am out of work following redundancy and don’t know how I am every going to be able to cope with a job again when I cannot remember what I am supposed to be doing from one moment to the next. My OH is very frustrated with me, as I am too, and I have no idea what to do about it.
Hi Helen
I never had chemo but have been on Tamox since January 09. There are other posts on here about side effects with tamoxifen and I think this is defo one as I cannot remember things some days, names the next word etc etc. maybe like you say its altzheimers (I am 60) but I dont think so.
Got my one year check/mammogram next month so I am going with lots of questions about tamox. I have put on 1 stone in weight and no I dont eat any more than I used to. Hot flushes/sweats, get one every 1½ - 2hrs day and night, itchy skin comes and goes, also developed a cough since finishing radiotherapy, although Oncologist sounded me last week and said just mention it and perhaps they will give you a chest xray when you have your check-up.
You will probably get lots of replies as this is an excellent site for help and support. Dont start worrying about brain mets I am sure its just another side effect of this treatment.
Chin up and soldier on, I just call mine “cancer brain” and try to laugh it off.
love Wendy x
Hi Helen, it’s Lynn,
Yep I can relate to most of what you are saying. I was only talking to my OH last night and stopped mid sentance because I couldn’t remember what I was going to say. This is not a one off, I am doing it quite regularly and have got a bit paranoid recently. I am also struggling to find the ‘right’ words, sometimes not even being able to recall simple words!! This has freaked me out a bit, making me fear the worst but logically I am thinking it is probably to do with zero Oestrogen in my body now.
I am also feeling frustrated workwise - just had a meeting with my boss. They will only give me 1 weeks holiday in the summer hols, so I have offered to go self employed, saving them money, and giving me the opportunity to have at least 2 weeks holiday. They have said ‘no’ to this. After the last 10 months of crap, I could do with them being a little flexible. This has been a real blow - I feel so fed up and low at the moment and was hoping for a little empathy from them, but no, nothing.
I also don’t suspect in the current climate is will be easy for me to find another job - who is going to employ me now labelled with Breast Cancer, I suspect I would be seen as a liability. It has certainly f****d up my life!
Sorry to ramble Helen - as I haven’t got anything positive to say except that I know where you are coming from.
Lynn x
HI LADIES
I know where you are coming from with this one, few hot flushes , gained half stone, bloating , cramps, forget things all the time, and my stomach has not really felt settled since Tamoxifen.
HI Wendy, wondered about you the other day, My mammo is due next month, have you got your date yet?. We never did meet up for that coffee, maybe we will meet at musgrove, who knows.
Take care
Libby xxx
Low oestrogen seems to be causing this. I am on Letrozole. It is made worse by waking at night, as I am too warm … due to low oestrogen. Vicious circle!.
Too little oestrogen + too little sleep = brain mush!
Oh yes I can really identify with the ’ losing it mid sentence !! I’m 62 but really was on the ball before Tamox. Concetration poor and also need to repeat stuff in order to ‘achieve mission’. Not just me then.
I thought this was just a reflection of my state of mind - feeling quite down and coming to terms after finishing rads last month, but I’ve been on Tamoxifen since late December and I have lost my ability to navigate. Last Saturday I set out on a short drive of about 8 miles that I have done at least every 4 weeks for the last two years and this time I found I could not remember the route. I had to stop and really think hard about it whereas before I drove it without thinking.
I am also losing it over little things - where did I put my keys, did I turn off the hotplate on the cooker, did I put a stamp on the letter before I posted it - its very worrying when I am trying to get fit to go back to work.
Is it the drug or is it the after-effect of everything that’s happened?
Thanks all, sorry we are all suffering but at least I’m not alone!
My brain is a little better now that my viral infection has gone, but still not up to scratch. I suppose I’ll just have to get used to it. I wonder if it will return to its previous state when I come off tamoxifen.
I’m getting rolls of fat around my middle too, despite not putting any actual weight on. It’s horrible.
One positive thing - I had my first night last night without a hot flush since October 25th 2009 when they started. Hooooorraaayyy! However I have had about five today, so not sure it’s a real cause for celebration yet. Still, one good nights sleep was better than nothing!
I have been on tamoxifen since 2008 and i have also had slight memory loss and attention span. I was on zoladex up until 3 weeks ago and since coming off that i feel like it has got worse! I am thinking it may be something to do with all of the hormone in balances etc but i am also slightly worried. Its effecting my work also as i seem to be getting things wrong in the last few weeks alot. My employer also is not very sympathetic and i sometimes feel that she thinks that the medication issue is an excuse. Its getting me down also and giving me that extra stress that i could be doing without. I know its no form of dimentia either as i am only 24. I have looked at side effects about this on tam and hormone therapy and there was nothing on there, well maybe they need to update it lol! Would certainly be nice to have something in writing to prove to my boss that im not useless and forgetful for no reason!
mairead - Maybe you could find evidence on the internet that low oestrogen levels cause the symptoms. I have not been the same since stopping HRT upon diagnosis and now I am on Letrozole.
I found this interesting article which is about oestrogen imbalance and it describes symptoms of low oestrogen really well. Perhaps you could print it off and show your employer.
Thanks, Emily. I hope it helps show your boss how unreasonable she is being. I don’t know how old she is, but she will probably feel the same when she reaches the menopause!
More evidence!!!
I read a little article yesterday about this topic. There has been a study at Northwestern Uni in the U.S. It suggests that the hippocampus-the area of the brain that is responsible for memory-automatically ‘rewires’ itself at certain times of the month, dependant on hormone levels.
They found a womans memory peaks when oestrogen levels are at their highest-so it makes sense that tamox will impact on our memory/thinking processes-
Im thinking 0f keeping the article, laminating it and give it to anyone left looking bemused when I dry up mid sentence!!!
Yes I had “T-brain” problems after I started on Tamoxifen last year - so bad I decided to stop taking it after 1 month - I could hardly concentrate enough to read a newspaper article, never mind actually do my job - I am self employed and my work involves a lot of research and analysis. Having just taken on my first project after chemo/surgery it completely threw me and knocked my confidence. My memory was really fuzzy - I couldn’t remember words sometimes. It also made my body feel stiff and achey like an old lady (I am 45), I had terrible mood swings and was so depressed some days I couldn’t make myself get up and was reduced to tears. A couple of days after stopping taking it I felt transformed - my energy came back and I stopped feeling depressed. The T-brain symptoms however took much longer to wear off - I tested myself by trying to do a crossword regularly (not a cryptic one - far too hard!) and gradually over a few months I’ve started to feel better and my brain has got back to something like normal.
I was told it was very unusual to feel so bad on Tamoxifen…
I’ve now started Zoladex as an alernative hormone treatment to Tamoxifen - I’m 2 days into it and this evening my brain feels a bit wierd - and yesterday I got on the wrong train coming back from work…so I hope I’m not going to get similar symptoms…will see how it goes…
Sorry to say this xmaslump but if the symptoms are caused by low oestrogen, anything that causes this will probably result in the same symptoms, so you may be no different on Zoladex. You would probably get the same symptoms with the menopause.
I suppose drugs vary and some may cause more problems than others, though. Sometimes they subside after a while, so it may be worth trying to hang on a bit longer. I do hope you find something that you can cope with, as I can see that it is crucial as you are self employed. Good luck.
I tried to play dominoes with one of my clients yesterday and kept forgetting how to play !! Tam brain and chemo brain again plus menopause. It is wicked how these things have robbed me of my abilities and looked very incompetent.Roll on 2013
Great Article…frighteningly I can relate to most of the symptoms!!
Took Tamoxifen for 5 yrs…[no probs when taking it apart from usual menopausal symptoms]…since stopping [last May,] have had numerous UTI’s, itchy skin, anxiety has got worse, concentration and memory awful…topped with the fact I had chemo too…not much hope lol !!!
Hi yes I have tamoxifen brain all the time and often give that excuse when my memory goes. It’s really embarrasing! A friend of mine said when she came off tamoxifen her head felt so much clearer. She came off because she said her life wasn’t worth living due to the side efeects. She had others too. Personally I wouldn’t want to come off it as I prefer to have it’s protection.
Yes, Tamoxifen brain does exist and it’s there in the medical literature. Like all drug side effects, some of us get it and some don’t, and some are more bothered by it than others. If you live with another adult and don’t work or have young children you are differently affected by the same level of confusion than if you live alone and do a responsible job and have to remember to collect the little ones and buy food and pay the bills &c &c…
The oncologists seem to treat it as [only] a quality of life issue and belittle its importance, because after all if your tumour is ER+, tamoxifen does seem to improve survival rates (which is thier marker of a job well done). But it’s not enjoyable living, is it, when you can’t even finish your sentence, plan a holiday, or type well enough to hold down a job!!
To find medical articles about it, you google [Tamoxifen + Cognitive] there is a lot out there. Cognitive is the medical word that describes thinking-type activities, and what we feel when we have tamoxifen-brain is cognitive dysfunction.
Interestingly, oestrogen (and its manipulation) also affects the schizophrenic population, which cross-intersects the cancer population…sadly my only previous serious illness was hormone-imbalance related, and had schizo’type-characteristics. But does my onc care? No, because tamoxifen “cures” [reduces the recurrence risk of] cancer…(decisions, decisions.)