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
Belfast City Hospital are doing a bit of research on this.
They may give you some info?
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.
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
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.
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.
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.