Who knows anything about chemobrain?

Also known as cancer related cognitive disorder. My onc mentioned that concentration was sometimes a problem but I forgot to ask if this is a short term or long term problem.

Hi, I had a strange episode - only one - when I went totally blank. Couldn’t put faces to names and vice versa, couldn’t finish a sentence. I knew what I wanted to say but couldn’t say it. It lasted for about 5 minutes and I was with a work colleague in my old workplace, she was very worried. She was mentioning good friends I’d made there and I was like ‘now that name rings a bell…’ I’ve noticed my concentration wasn’t great during and just after chemo but I feel a bit more ‘normal’ now, 9 weeks on. I’m thinking (hoping) it’s a short term thing. I’m sure others will have some input. Pat x

Hi

I’m still on chemo. When the chemo is raging in that first week after injection my brain is mush. Not a 5 minute blank like you’re describing Pat, but just not finding the word I want, or forgetting names. Happens regularly but tails off in week 2 and then I’m as forgetful as usual! Interestingly I’m fine when typing, it’s only for talking that it happens.

'Scuse the back of my head. Not being rude, just showing growth to some others 8 weeks after end of Epi. :slight_smile:

I’ve turned round now. :slight_smile:

Hi all, you may be interested in this link to recent research concerning ‘chemobrain’

breastcancer.org/treatment/chemotherapy/new_research/20080417b.jsp

X

S

That’s interesting S, thanks for the link.

I definitely think in my case it’s the tiredness and fatigue caused by the concentration of chemo after each injection, because it goes away. On Epi I used to get proper depression for 2-3 days as well. Some nurses suggest it’s coming off the steroids, but it would start on the steroids. Having experienced it and being able to think about it and the pattern of it now that I’m clear of epi, I’m pretty sure the chemo gets to every conceivable part of you, including the mood modulating parts of the brain. The CMF doesn’t cause depression for me, so that rules out the steroids.

Yes, it’s an interesting link, isn’t it. My personal experience doesn’t chime exactly with their findings, but there are lots of similarities.

Agree absolutely with chemo getting everywhere, Carole, (and so it should! :slight_smile: and altering mood quite drastically.

X

S

You’ll probably hate me but…I’ve still got it and I finished chemo in Dec 07 and my mum still gets it 7 yrs on.

I used to be a really logical, organised person - never needed to use a diary, really good with remembering to do things and now I’m useless and find it very frustrating. It’s the going into a room for something and then forgetting why I’ve gone in, do something else, go away, remember what it was, go back and still get distracted. This morning, when my other half asked me how much bread we had left after I’d had toast I couldn’t remember at all ( I couldn’t even remember what loaf it was I’d used) and this was only an hour later when we were shopping. It was only when I came home that I saw what I’d left. Still, it’s not a crisis in the scheme of things, is it ?? Always bread and butter pudding to make…

At first I really thought I was losing the plot even though I’d seen mum with it. I try to do puzzles, read etc,etc to keep my brain going and not vegetate completely !

My onc and the other docs and nurses treating me have said it’s not me imagining it and that it is a side effect of treatment, especially in relation to the hormonal side of things, and that people react differently to it just like any other side effects.

Sorry if this sounds a bit depressing but it is only my personal experience.

Not depressing at all Lizcat. Never worry about describing your experience. It all adds to the bank of knowledge.

Your right though, it affects us all differently. Hopefully given a bit more time you’ll get through it. That’s a great idea keeping up with puzzles and reading. That’s a recommendation for us all, chemo or not. Use it or lose it, as they say. :slight_smile:

Love the bread and butter pudding idea!

Hi there

I’m having a similar experience to lizcat. Finished chemo in Oct 08, and memory is shot to pieces. I too find it incredibly frustrating. I don’t even remember that I have forgotten something often, which is worse than knowing I’ve forgotten something but not remembering what it is!

Hope we all get better!

Kinden
x

Hi there

I finished chemo in December 2008. My brain is now worse than when I was going thro chemo! I’m back at work and am doing well (except for tests looming - that’s another story) but couldn’t remember the name of a colleague who I’ve worked with for 20 years! It was so embarassing having to ask her name! I make a joke out of it but really feel it. I used to be so organised but now I’m hopeless. Really hope it improves.

A colleague of mine finished chemo three years ago but her son still calls her ‘confused.com’.

It’s so annoying…

Mal

Mal and Kinden, are you on hormone therapy? I didn’t have chemo, but tamoxifen has made me forgetful.

Yes, I’m on the delightful tamoxifen and having hideous hot flushes and leg cramps, etc etc as well no brain! Oh what fun this is!

Hi all,

Kinden - I absolutely relate to the forgetting thing.

From what I can gather, it’s all to do with chemo and hormone stuff but was first noticed in bc patients having chemo hence the title. My pregnant friend (no bc) has similar problems to a lesser extent and was told it’s to do with a drop in oestrogen levels and I’m sure I read something about that in the Daily Mail comparatively recently.

I had it from the early chemo days, then on tamoxifen for the short time I was on that and now on Arimidex and it’s possibly slightly worse. Or perhaps that’s all the other side effects not helping !!

On a positive note, it’s a very handy excuse…

Liz

Hi Salopets

Yes I’m on femara. Have been for six months and haven’t noticed any side effects (except the first week which were horrendous), just the chemo brain. Whether it’s down to chemo or femara I don’t know. I’m lucky, I suppose cos loads have problems on femara.

My colleague, who is 3 years out, is on tamoxifen ( a lot younger than me).

Will it ever end???

Mal

I have just finished chemo this week and am so frustrated by my lack of memory or even saying what I think I am saying. I was so organised but now I have to rely on the kids to help. God help me when I get back to work.

I am going on to hormone treatment in a few weeks - not looking forward to that - although onc said it had few side effects - he’s obviously not read any of these sites!!!

at least I’m not alone.

Morning,

Meant to put down last night but forgot - can’t think why !!! - what the chemo brain feels like to me. I told a friend who also has it and she said she feels the same (we compare notes occasionally so we are not alone in thinking we’re nuts!)

My brain feels like a washing machine with all my thoughts/things to do etc going round like the washing does and then when I try to get some order to it all and get stuff done, it’s like getting the washing out when it’s finished and all tangled up and you’re trying to separate it out.

I probably seem like I’ve lost the plot completely this morning but hey it’s the drugs !

Liz

hi all,

just to say that i am so relieved to read this thread, thought i was the only one and now i’ve got a name… i used to call it my chemo head, just got to change to brain.
i finished chemo june 08 and i am on tamoxifen. besides lack of organisation and the ‘washing machine’ thought syndrom, the thing i hate most is that i say something, or at least think i do and a completely different word comes out. then my kids or OH correct me and they are annoyed, irritated by my mistake! mind you it must be a drag to have yet another thing to put up with. i was the family memory and am still trying to be the organiser.
if anyone has found ways to improve the symptoms would love to hear.

love,

er what was my name again? o yes,

lenny
xxxx

Hi Ladies hope you are all well

i finished my treatment i.e radiotherapy end of Jan 2008 also then started Tamixofen for 5 years. i forget things so easliy someone may have told me something last week i have totally forgotten. i use my diary on my phone for eveything. It is lack of concentration? if you know what i mean. Dont know how long it will last due to that i get stressed and with now i have problems with my smears have checks every 6 months not one thing its another ( sorry for the moan)

and one last thing no one understands even when they say they do cause after a bit they get anoyed because you using that excuse again i.e cant remember. The only people who do understand is the people who have been through this

have a good day
simxx