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Tamoxifen brain?

33 REPLIES 33
Guest user
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Re: Tamoxifen brain?

Don't worry Ann, I was being (sort of) facetious when I said it was scary. It is scary, but I think we should learn about this stuff, scary or not, all the better to be informed about what is happening to ourselves. I don't think you should remove the link, I for one am glad that the medical profession are taking our complaints as serious and not just the mutterings of menopausal women lol!

The effects of low oestrogen should be explained as a possible side effect of chemo. My chemo (which was my choice to have, not a medical recommendation) zapped my ovaries and dumped me into the menopause, hence lowering my oestrogen which is now reduced even further by the action of the tamoxifen. So even if I stopped tamoxifen I'm likely to suffer cognitive problems. I wonder if I'd known that whether I would have made the same decision about chemo.

Linda, I wouldn't worry too much about work, there are plenty of older post-menopausal women with reduced oestrogen who function perfectly well, I think we probably become accustomed to living without it and find ways to cope (lists everywhere being one of them!). I for one find it a struggle to focus on work at the moment, but I really think that is because I was made redundant last August and haven't worked properly since and can always find an excuse not to work when I am at home. I'm just lazy!

all the best

Helen.

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Re: Tamoxifen brain?

I have found that the link doesn't always work so, if not, Google "low oestrogen and cognitive dysfunction" and it is the first one that comes up - well, it is at present, anyway. The article is called:- "Effects of Estrogen: Estrogen and the Brain". As I said,it is American, hence the spelling.

http://www.medscape.com/viewarticle/406718_2

Personally, I cannot ever see myself stopping Letrozole because of symptoms of low oestrogen. I am so grateful that I have a drug that may keep bc at bay.

Ann x

elsk
Member

Re: Tamoxifen brain?

You know what? Even after 10 days of not taking Tamoxifen, I am still suffering with the cognitive effects. In my last post I meant to say that my GP had prescribed Tramadol for my joint pain, not Tamoxifen - I was already on Tamoxifen obviously.

Here's hoping my brain cells recover before too long.

Ann, I don't think you should remove the link to those articles. I found them very interesting. It was scary to read, but I think we owe it to ourselves to be fully informed of the possible consequences of medication that we're taking. Obviosuly we want to do all we can to protect ourselves from recurrence, but not blindly following advice from people who may turn out to be ill-informed themselves. I had never come across any mention of cognitive side effects except on this forum and it horrifies me to think that many women are being subjected to this needlessly or for little relative benefit. It is almost worse than the old days when radical surgery was the answer when now they can do less invasive procedures and preserve quality of life. I really think they need to look at the rationale behind blanket prescriptions of these drugs,

E xx

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Re: Tamoxifen brain?

Hi there it makes me wonder if I will be ok to return to work as I have a very responsible job with very vulnerable people its a wonder that doctors ect should work while on these drugs but 5 years is a long time to be off sick !!!!!!!!!!!!!!

Love Linda x

mafsmum
Member

Re: Tamoxifen brain?

thanks for your reply elsk.

gill x

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Re: Tamoxifen brain?

Thanks for that one Ann, I must have missed it. Funny enough the rest of my body managed quite well on reduced oestrogen, just my brain really needed it.
Well done to you Elsk and I'm glad you are feeling so much better

Guest user
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Re: Tamoxifen brain?

Sorry, Helen. I didn't put the link on here to scare you. I just wanted to know why it was affecting my brain and this seemed a good explanation. I thought others may want to know, also. It didn't say that low oestrogen necessarily leads to all those things, more that oestrogen may offer protection if one is pre-disposed.

I still feel it is well worth taking the Letrozole that I am on and wouldn't want this article to dissuade anyone from taking Tamoxifen or an aromatase inhibitor. Everyone is different, as we all well know.

If anyone thinks that I should remove the link, then let me know but no-one need read it if they don't want to. What do BCC feel?

Ann x

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Re: Tamoxifen brain?

Ann

OMG what a scary article. It has clarified my worst fears about the sudden drop in oestrogen levels in my body as a result of a chemo induced menopause and now followed by taking tamoxifen. OK, so I might not get a recurrence or die of breast cancer but I'm likely to suffer dementia, falls and alzheimers at a younger age. And there is no hope of it getting better, I'll just deteriorate with my memory getting steadily worse, not being able to function as a normal human being. Horrible thought.

Surely there comes a point where this is just not worth it? I almost think I'd rather take my chances with the cancer and come off the tamoxifen completely.

Helen.

elsk
Member

Re: Tamoxifen brain?

Hi Gill,

If you really do have a good prognosis, then you need to go back to your GP and onc and insist that they justify to you why you have to keep taking the meds.

I had the same issues with joint pain and my GP had prescribed Tamoxifen (I can't take anti-inflammatories because of a bleeding disorder). The Tamoxifen knocked me out so I could sleep, but it left me feeling muzzy during the day and I wasn't happy with it as a long term solution. I am really against taking drugs to counter the side effects of other drugs as who knows where it can end. I was fit and healthy before bc and I wanted to be back to the point where I can tell if there is something wrong with me and not be wondering if it is due to medication that I'm taking. I also needed to get back to work and it was out of the question while I was taking Tamoxifen. I stopped Tamoxifen 9 days ago and went back to work today for the first time and it was great! I feel like myself again - although still a bit tired.

My onc showed me an online program that he has access to that helps to calculate the risk factors based on your pathology report. It then comes up with a recommendation as to the benefits of adjuvant therapy versus the risks and the side effects. It is called Adjuvant Online and you should ask your doctor to use it if he doesn't already.

Good luck and don't be afraid to stick up for what is right for you.

E xx

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Re: Tamoxifen brain?

hymil - After reading your post, I Googled "low oestrogen and cognitive dysfunction", as I had always wanted to know exactly why low oestrogen affects brain function. I found this interesting article. It is American and I take it that ERT is our HRT.

http://www.medscape.com/viewarticle/406718_2

The part that made me laugh was where it says that my husband will have more oestrogen circulating his body than me, due to aromatisation of testosterone to oestrogen!

The part about postural stability will explain why I can no longer stand on one leg to put my tights on:)

Ann x

mafsmum
Member

Re: Tamoxifen brain?

p.s.

i have the brain thing too - probably from the low oestrogen and i need my brain for my job 🙂

i couldn't even concentrate to read a chat magazine in the waiting room the other day 😞

gill x

mafsmum
Member

Re: Tamoxifen brain?

hi ladies,

i'm reading this thread with great interest as although i am on letrozole not tamoxifen - i have the same sort of symptoms.

i also have horrific joint pain and get really bad pins and needles in my arms. my g.p. has put me on a high strength anti inflammatory for a month to see if that helps.

i have been on letrozole for almost 5 months now and was really hoping the symptoms would lessen.

i have a good prognosis but when i told onc and g.p. that i was considering coming off it - they threw their hands up in horror!

i really feel that my quality of life is compromised - prior to b.c. i was fit and active - now i feel like an old cronk!
i feel that it is stopping me moving on from b.c. and getting my life back.

gill x

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Re: Tamoxifen brain?

Interesting comments

My oncologist has been very fully aware of the issues with me in relation to hot flushes and memory loss, which are both due to the lack of oestrogen or tamoxifen's interaction with the hippocampus area of the brain. In terms of side effects, neither of the above are medically significant issues, they are more to do with quality of life.

Throughout all of my treatment it has been made very clear to me and well explained that there is a balance of risk with quality of life, permanent damage to my body versus death from breast cancer etc. I've always been part of my decision making process and so should we all, after all, these are our bodies we are talking about. I made the decision to have chemo in order that if I had problems with tamoxifen then I would feel reasonably ok coming off hormome treatment if I needed to. My oncologist has said that as I have a good prognosis I would be ok to come off tamoxifen after 2 years as opposed to 5, but to try to stick it till then. He has recommended everything that he can for me to take and now it is up to me to decide what to do. I expect that if my prognosis was bad then all the risk factors would be entirely different and I would have a different decision to make.

So far, I'm coping with the memory loss, although it is very frustrating. And it looks like the hot flushes might be on the way out - hooorrraaay!

good luck all

Helen.

elsk
Member

Re: Tamoxifen brain?

I've just come off Tamoxifen because of the side effects including memory lapses and 'woolly thinking'. My onc did listen to me and agreed it was the best thing for me. However, my prognosis is good - risk of recurrence as low as it can be - so it made sense not to seriously impact the quality of my life for the next four and half years. This wouldn't be the case for everyone and you need to carefully understand your own risk factors before making a decision.

As I've been reading and contributing to posts on the SEs of Tamoxifen, I am amazed that there hasn't been a more comprehensive study of the side effects since so many are listed here on these forums that appear to be described as uncommon on the leaflet that comes with the pills. Surely it wouldn't take much to gather data from every woman who is taking Tamoxifen, at regular appointments during follow up?

The effects of Tamoxifen for me have been the worst part of the whole treatment and the hardest to explain to my employers as I present them with yet another sick note. I am very lucky that I have an exceptional GP who has believed me and supported me and stopped me from thinking I was going mad. There needs to be a much wider knowledge and understanding so more women don't have to live with this misery just because its the easy option for the medics.

E xx

Guest user
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Re: Tamoxifen brain?

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.)

Guest user
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Re: Tamoxifen brain?

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.

karen
Member

Re: Tamoxifen brain?

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 !!!

rachy7
Member

Re: Tamoxifen brain?

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

Rachy xx

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Re: Tamoxifen brain?

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.

Ann x

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Re: Tamoxifen brain?

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...

Everton_babe
Member

Re: Tamoxifen brain?

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!!!

Guest user
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Re: Tamoxifen brain?

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!

Ann xxx

mairead
Member

Re: Tamoxifen brain?

Thanks Anne, thats really useful. ill print that off now.

Emily x

elsk
Member

Re: Tamoxifen brain?

Ann, that article is spot on - so accurate it is scary!

W x

Guest user
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Re: Tamoxifen brain?

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.

http://surmeno.blogspot.com/2006/03/symptoms-of-estrogen-imbalance.html

Ann x

mairead
Member

Re: Tamoxifen brain?

hi everyone.

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!

Guest user
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Re: Tamoxifen brain?

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!

elsk
Member

Re: Tamoxifen brain?

Hi All,

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?

E x

Lazydaisy1
Member

Re: Tamoxifen brain?

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.

Guest user
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Re: Tamoxifen brain?

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!

Ann x

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Re: Tamoxifen brain?

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

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Re: Tamoxifen brain?

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

Guest user
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Re: Tamoxifen brain?

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

Guest user
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Tamoxifen brain?

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.

Anyone else suffering from this?

Helen.