Hi all, thought this would be a good place to ask! I’m 7 years clear. I had FEC and Docetaxol, herceptin, rads and was on arimidex for 6 years, now on tamoxifen for another 4. I’m 52. I had an “over sensitivity” to the chemo - particularly docetaxol, which was stopped 5/6 due to neutropenia sepsis on 4/5 cycles and lots of side effects. Still have peripheral neuropathy and other side effects. I was chemically then surgically put through the menopause early as a preventative measure. I love my life and I look after myself - go running, drink little alcohol etc, have a job I really enjoy, good family and social life.
I’ve had problems with memory and sequencing tasks - getting in a muddle sorting washing for example. I forget words, I feel in a fog. I used to be able to knit and crochet, but my brain doesn’t connect with my hands any more - I can’t work out how to follow the stitches.
I’m still seeing my oncologist - when I described my memory problems last year the oncologist I saw said that chemo brain is real, and can be long term. Yesterday I saw another oncologist and he said chemo brain would only last a few months definately not this long - even with the over-sensitivity to the treatment. He suggested that I go to see my GP as my Mum had early onset dementia in her 50’s. Now I’m feeling very concerned. I know the memory problems happened after the chemo - so I was in my 40s then. Since I went back to work (after 6 months of treatment), I found that I could no longer remember colleague’s surnames - my memory was super sharp before. It is getting worse though not better. I would be really interested to hear from others. Sorry bit of a ramble…
I am sorry to hear that you’ve been struggling with long-term chemo brain. I am sure some of our users will be along to share their experiences and show their support soon.
In the meantime you can always use our Ask the Nurse service or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear.
Hi I am over 4 years post treatment and I find I suffer with my memory also with concentration which gets really frustrating at times. I find it hard to keep track of everything going on especially all the things that go on In my daughters life I know she has told me and then I have to pretend that I remember! I think it is real and will affect some more than others and in different ways x
AliceBlue I would think it’s the chemo, but may be worth checking if dementia runs in your family. I’m sure the GP just suggested the check as a precaution. It’s well known chemo brain can go on for years, although most are through the worst after a year or two. I still have problems remembering new info/people’s names & fogginess comes & goes. I read repeatedly doing an app called BrainIQ can lead to improvement. I have downloaded it, but I’m not that great at it. Good luck xx
It was helpful for me to recognise so many of my symptoms and gave me comfort as to that I was no going mad…
Having researched a little further elsewhere - it seems that the C from the FEC, the radiotherapy and the Letrozole I am on - may be the underlying cause.