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'Chemo Brain'

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Re: 'Chemo Brain'

I had Chemo before any surgery etc back in October 2012 - March 2013.   It definitely affected my brain function.  People joke about Chemo brain being similar to baby brain.  I found it to be pretty bad and did look for research at the time and found some stuff which referred to Chemotherapy Induced Cognitive impairment. 

 

I personally did find some memory loss, lots of physical stuff such as nerve damage, muscle damage and eyesight and hearing were really affected.  My cognitions were affected, slowed thought process which led to me losing confidence in decision making.  I am a Clinical Nurse Specialist in Psychiatry and was worried about returning to work, making decisions, managing risk etc.  The best description i can think is that i felt fragile for a long time, probably up to about two years.  

 

The worst thing was i found myself unable to recall some words, i knew what i wanted to say but the word would not come into my mind.  This was not just my fragility it was noticed by other people.  There were lots of occasions when this happened and my Husband was great, he would not give me the word and we waitied until it came..... One example was when i wanted to write a shopping list and he was going upstairs i asked if he could bring me .... urm... some of that white thing..... in the loft... slices........ to write the shopping list... it took about five minutes until i could remember 'a sheet of paper please out of the loft'... This was a particularly upsetting occasion.  The effects were very similar to people experiencing Dementia. 

 

I returned to work January 2014, 11 months after the end of Chemo (lots of surgery Radiotherapy etc) and had a graded return to work over 3 months then made sure i used some holidays each month until i could get a change in contract as i was exhausted all the time.   I now only work 24.5 hours per week which is great as i have some residual Chemotherapy damage, peripheral neuropathy and creaky / painful joints from Letrazole.  Also a gorgeous Grandson and a desire to do other things with my time.

 

One of the pieces of research i found at the time had done scans of the brain immediately after Chemo and found small white deposits (similar to Lewy Bodies in Lewy Body Dementia) these reduced in time and were not evident after two - three years in the research..

 

Hope this is helpful.   Butterfly x    

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Re: 'Chemo Brain'

Hi Chemobrainresearch,

 

Can you please let me know a little more about your research.  What is your specialty and area you work in?

 

My experience now, 6 + months post chemo (FEC-T) is that concentration and ability to read documents is affected. As an example I booked a hotel and had to cancel. Then I discovered that although I had read the terms and conditions I had no fully understood them.

 

Comprehension of the written word is a problem now. It wasn't before.

 

I'd say that it is not getting any better. 

 

Overall, I have had so many problems with side effects from chemo and treatment that I hope I never have to go through this again. One thing that really sticks out is the lack of help and advice from side effects and especially the severe / ongoing ones. 

 

I'm hoping that you are looking into why chemo brain occurs physically and how that it physically affects cognition. We badly need this research.

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Re: 'Chemo Brain'

Hi chemobrainresearch

just an update - memory much improved now not having multiple appointments etc. to contend with so in my case it was definitely information overload (and I didn't have chemo, as previously noted.) In answer to your question as to whether if i had to have chemo would memory loss be a feature in a decision to have or not to have, the answer has to be i would do whatever was necessary to prevent a recurrance, including chemo, irrespective of the side effects, which are many, and seemingly horrible, but better than more cancer! I think you are right - the info overload would be the case for all of us, so chemo on top would make the whole memory/concentration thing much much worse I reckon. If your research confirms what everyone having chemo seems to know already, that there is such a thing as chemo brain, then at least the medics can reassure people that it is normal, (though blooming rotten) hopefully won't last for ever, and can avoid people having huge worries about potential dementia on top of all the cancer worries. Hope the research continues well. xx

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Re: 'Chemo Brain'

Hi Sue!

 

Sorry to hear about the issues you've been facing. I would speak to your GP (or a different doctor if you feel you'd like another opinion) and see if they can give you further advice As I was saying in one of my other posts, I think it is likely there are multiple factors at play in what causes people to experience memory problems during and after their treatment. I was saying to Optimissy that I think information overload and the semi-constant background distraction of thinking about treatments etc makes it harder to remember normal things when your brain is working so hard trying to make sense of everything else!

 

Did you get any information before your treatment about possible side effects on memory? And would you like to have know how you might feel before starting treatment?

 

My reasearch is trying to find out if there is a definite link between memory and chemo, both short and long term and the impacts and the extent of these.I hope that it will allow people to be fully informed before embarking on treament either way!

 

All the best x

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Re: 'Chemo Brain'

Hi Optimissy!

 

Glad to hear things have been improving! I do absolutely think stress and the whole package of change that comes with cancer can affect memory and concentration. If I asked you to try and solve a maths puzzle while making a cake I'd bet the numblers in the puzzle and weights in the recipe would interfere with eachother, and neither would have your full attention. I think if thoughts about your illness are always ticking away at the back of your mind then there's less free space in there to take in day to day information and so inevitably you don't remember everything.

 

This is one of the reasons I'm keen to do the research I'm doing. If we find that memory issues etc ARE worse in people who have had chemo, then because 'stress/ information overload brain' is going to happen to everyone, then any additional issues, in theory, would be down to differences in treatment - ie chemo.

 

If you were deciding whether to have chemo or not, do you think memory loss as a side effect would be a big influence on your decision?

 

All the best!x

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Re: 'Chemo Brain'

Hi

So sorry to read that you are struggling. 

If I were you, I would go back to your gp and ask to see a specialist if your not happy. The stress and worry of it all, will only be making things worse.

Also, speak to your bbc nurse or consultant and see if there is something else you can take other than herceptin.

Don't feel you have to cope with this on your own. And don't let them fob you off.

Sending a hug x

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Re: 'Chemo Brain'

I had my chemo over a year a go then went on to herceptin that was stopped in January this year because I was so ill from it. I was noticeably forgetting stuff but was constantly told by the professionals that it wasnt the treatment. My memory to what it was is awful, although I did go to the doctors for a very short 20 minute test and she said I was normal. Im afraid Im not and to cover up for my total inability to cope with remembering things which includes appointments, doing things with friends, remembering daily stuff, knowing where places are etc, I simply agree with everything people say to me. Then just get totally confused and disorientated. This then leads to a downward spiral as I get so very angry, and cant even remember why. Its a total frustration. Chemo and the hercetin have left me feeling as if I live in this whirl that one day I pray will stop.

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Re: 'Chemo Brain'

So interesting that you are researching this - really grateful. I have just had my final cycle of 7 of FEC-T, and chemo brain has been a huge issue for me. I work in a creative media environment, and whilst I can perform routine tasks when I'm otherwise well enough, I've found that creativity completely goes out of the window - devising and writing up that irresistible new programme proposal, for example. The other thing I can't do very well is "think on my feet" - for example, answer unexpected questions when I'm pitching ideas, mainly because chemo brain prevents me having names and facts at my fingertips which would usually be there. When this makes me nervous, of course the effects get worse.

 

I am quite concerned about what all this will mean for my future career if the symptoms don't recede. Very interested to hear from others and more than happy to provide more detail if needed.

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Re: 'Chemo Brain'

Verbal communication/social situations are more challenging now, but I feel this is more likely due to me having experienced sudden hearing loss, 3 weeks after my last chemo...but could also be down to slower information processing? I'll try the assessment that you suggested though - thank you! Regards, Julie
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Re: 'Chemo Brain'

Hi chemobrainresearch - general "ageing" absent-mindedness started well before diagnosis (!) but I think the poor memory and concentration would have been fairly soon after diagnosis - November 2016 - and has continued since then, though last week or so my brain is more back to its normal functioning, (well, normal for me! I still feed the cat twice if i can't remember whether I've fed her or not and can't find an empty sachet in the bin.....but I think she's wise to me and rubs around me asking for food even though been fed) so given that I DIDN'T even have chemo, I put it down to the information overload, so many appointments, and of course reading up on breast cancer and learning as much as I could. I don't know about how long  chemo brain lasts, but the "post-diagnosis" brain is pretty well OK after 3months (ish).

By the way, I did an on-line dementia test and according to the results of that my old brain is jolly good! (AND I got 10 questions right on University Challenge this week!) Do you think stressful situations - operations etc. - might be a factor in peoples' temporary memory and concentration changes? Hope this helps your research.x

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Re: 'Chemo Brain'

Hi Optimissy64! Thanks for your reply! 

 

It sounds like it's short-term memory that's been affected for you (although if it's any help I always forget what I've gone upstairs for too, and I'm in my twenties!!!).

You've said you didn't have chemo, can you put your finger on when you first started noticing some of the changes you've talked about? Was it after your diagnosis or after the radiotherapy or at a different point? It's interesting to try and build a picture of how things changed over the course of your diagnosis and treatment, and maybe try and look for a pattern in yourself and others.

 

All the best! x

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Re: 'Chemo Brain'

Hi j.reynolds958! Thank you so much for taking the time to reply to me! From what you've said it seems like the tasks you find more difficult invove letters/numbers and written communication - do you ever have problems following conversation or finding words when you're speaking rather than writing? Or do you find social situations more of a challenge now compared to a few years ago?

 

I'm really sorry to hear that you've lost your confidence following your illness.  Please don't be afraid to go to your GP and discuss any concers about dementia, there is an assessment called the GPCOG which is a few questions and recall tests that are used as a screening tool for those kind of things - it may help put your mind at rest!

 

All the best! x

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Re: 'Chemo Brain'

Wow - you're a year younger overnight! Can't be bad.xxxxx

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Re: 'Chemo Brain'

Hi Optimissy64,

 

Thank you so much for your reply, that's very reassuring - I'm so glad to hear that I'm not the only one who's had a bit of absent-mindedness!  Loving your user name, too, we've lots to be optimistic about, including the fact that when I reread my original post, I realised that I'm still only 58 years old, and not yet 59... Chemo brain, lol!

 

Now off to buy a diary . . .

 

Best wishes,

Julie xx

 

 

 

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Re: 'Chemo Brain'

Hi j.reynolds958

Just to reassure you a bit - I had WLE and SLNB in December, and radiotherapy in February, and although I didn't feel especially anxious during all this, I DID find my cognitive functioning impaired and to some extent it still is. And i didn't have chemo! Like you i thought it might be dementia starting (!) as I am a few years older than you, but rationally I decided that it was simply that there was was so much new information to take in, so many new words to learn, so many appointments to schedule in, that the brain focussed on those and not on the more routine stuff. Even now if a neighbour in passing asks me to feed their cats in a week's time when they are away I ask them to email me as I might have forgotten by the time i get home! And as for the "what did I come up here for?" scenario - I had that before my diagnosis! Also the names of familiar things - like a plant- sometimes I can't remember until it comes into my mind half an hour later.

If you've had chemo as well I'm not surprised your brain is a bit "off" just now! After I retired I kept up the diary habit which  is the only thing that ensures I get to where I'm supposed to be on a given day!!! I'm confident that "normal service will be resumed" in due course, when the cancer slips more to the back of the mind instead of the forefront. I'll bet there are others who will answer your post with similar experiences. xxx

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Re: 'Chemo Brain'

Hi!  I'm pleased to hear about your research, and interested to find out if others have had similar experiences to my own.  I finished chemotherapy on 31 October 2016, and although I didn't notice any changes in my cognition during chemo itself, I think I've had 'chemo brain' ever since.  Certain tasks seem to be much more challenging now, and take me longer to achieve, e.g.; drafting an email, sending a text, or even writing a birthday card - it's not so easy to find the words I need to express myself succinctly at my first attempt.  I frequently redraft emails and texts, again and again, and really have to concentrate, to find the right wording.  I tend to put off tasks that involve using the pc, especially those that involve figurework (e.g. checking my bank statement), as I seem to be more likely to miss detail, or get confused.  Strangely, when I'm involved in a task, it all seems very straightfoward at the time.  Then I'll go back to it hours, or days later, and realise that I've missed something, made a mistake, or misunderstood information, and think 'how on earth did I get that wrong?'  For example, double-booking myself for social events, misreading the price of items, or forgetting that I've completed a task, and attempting to do it again.  Decision-making also seems more difficult now, even deciding which product to buy when shopping seems to take longer than before!  

 

Of course, there may be other explanations, and these changes may not have anything at all to do with having had chemo.  I've taken early retirement from work, so no longer use a daily diary (though perhaps I should!), and don't get as much practice now, in using written communication.  I'm 59 - maybe it's just because I'm getting older?  I've certainly lost confidence in myself, due to having breast cancer, maybe this is a contributary factor.  But I'm also scared that these could even be the first signs of dementia . . . 

 

So I've shared my concerns with my family, who have been reassuring, and suggested the changes in my ability to think clearly are simply because I've had a lot of other things to think about, and am still adjusting to a different lifestyle.  It would be reassuring to hear if anyone else has experienced similar issues, following chemo.

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Re: 'Chemo Brain'

Belfast City Hospital are doing a bit of research on this.

They may give you some info?

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'Chemo Brain'

Hi all,

 

I'm starting work on a research project into the effects of chemotherapy on cognition. I'd be really interested to hear some of your experiences and get a feel for what some of the findings of this project might be.I want to hear the more 'human' side before I get to the number crunching!

 

Have you noticed any changes in your thoughts or thinking during/since having chemotherapy? How long did it last? Do you feel back to normal now?

 

Thanks in advance for your replies