At first onc team blamed anything and everything! They accused me of being depressed, anxious, said it was menopause, I can't remember what else - oh lack of sleep! I disagreed and indeed a psychologist ruled out most of those things. They said it was tamoxifen ( no sorry memory probs etc started before I took Tamox)
There is much research about chemo brain and breast cancer - have a peep on Google.
Anyhow - I went last week for my yearly visit. I was all geared up for an argument with them as I was beginning to feel like the world didn't believe me. But I saw a new lady and was astonished she knew what I was going through and had other patients the same.
Everyone is different - it might be the meds for you...
I've managed to get a referral to memory services rehab for coping techniques - we'll see!
Hope it improves for you xx
what did the onc team say then?
my memory's no better you just have to get on with it don't you? But I did speak to my surgeon last month and she said it is the medication not chemo as that would be out of my system by now. At my hospital they're trying to setup an 'After ClinIc' for the problems we have after treatment has ended which I thought was a good idea. BCNs are good but they're so busy all the time.
im still doing the list, notebooks everywhere then can't remember where I've put them - it's so frustrating! But actually reading this thread has made me feel better - year and a bit to go for the five years. Will it improve then do you think?
Hi Katieb, I wondered if you were any better. It hasn't eased for me. Came on here to read up on memory problems and read a post further down. "This describes me exactly" I thought! Yes, of course it did - it was my post.
I have at least got my onc team to recognise the problems at last!!
I've just found this thread on the new website - I thought it was only me! I've looked at the link and that's me. I was also worried about dementia but feel much better now in a way. I work in a care home and see the elderly with dementia & sometimes actually think is that me. I use a pill box too and there are days when I forget my tabs completely. I do try to slow down and not fill my head with too much. I finished treatment in January 2012 so haven't got too long left on letrozole.. Will the memory etc improve then? I hope so but if not will live with it - thankfully. Take care ladies xx
Hi all. Talk about bad memory. Tonight for tea, I thought I'll do some nice salmon fillets, heated up the oven to correct temperature had the salmon wrapped in foil, oven reached the temperature, set the oven for 20 minutes, waited for salmon to cook. Looking forward to this. Bing bong, 20 minutes later ,yay ready. No!!! I fogot to put them in. Everything else was ready but the salmon!! So in the end I had to microwave them. Can't believe I did that, lol. Must be the Tamoxifen! !!!!
Bit of a delay but just seen your post - my memory / focus / concentration is awful (finished last Apr)
I have lists but forget or ignore them!
Oncology has head in sand it is not recognised I don't think
Perhaps they think I make it up!
Hope you manage to cope xxx
Gilly and all
I too have just discovered these articles after my worries about my memory and ability to multi task have increased. I'm 43 and was in a responsible jobso I know what my brain was capable of. I hoped my brain was out of practice and needed warming up like after maternity leave but I don't think that's it any more - ive exercised my brain and i forget even basic things like my friends name! I'm not on any hormone treatment and the research out there seems to be pointing to chemo as the culprit so ladies don't reject your meds....
My concern is what to do about it. I'm 18 months out from finishing treatment and the studies are quite variable in the timescales looked at for recvoery and studies looking at helping are very early days.
Damn cancer and damn side effects. There just is no getting on with life as it was even after you get the thumbs up from the doctors. I exercise and am still pooped! I feel I've aged before my time.
Why don't they warn you about this?
There are some good clinical research articles on Chemotherapy Induced Cognitive Impairment if you Google. I still have meds dosette box to make sure i don't forget Letrazole, calcium etc I am 2.1/2 years on from end of Chemo, have peripheral neuropathy remaining but my brain functioning is as near to previous as i think it is going to be. I had 12 moths at least where i wrote everything down in a little book, appts GP anything that somebody said etc etc This very gradually improved. Take Care Gilly x
Yes lottie63, they are. I've been misplacing words for a while now, I can't leave the house without compulsively checking the stove, doors, windows, etc. (having once left some eggs boiling on the stove when I went to the Turkish Baths, not a relaxing experience when I remembered...), can't find keys, glasses, obviously can't remember why I went upstairs - or downstairs, today my husband found my bank card in my dressing gown pocket. I'm sure I had a good reason for putting it there, but...
The checking thing started before the cancer, sparked off by being harassed at work over 2 years, but the elusive words and misplacing things is more recent and has got worse since I started on Tamoxifen. I was on Anastrazole for app 3 years but swapped due to the joint and muscle pains, only to get the leg cramps. I don't remember having the same memory problems on Anastrazole. What makes it worse is my Dad died of dementia and I'm always on the lookout for it.
Research helpfully points out the taking oestrogen can improve memory problems. Great! However, I finally decided it's better to accept that it's happening and try and manage it rather than stressing out about why it's happening. So, pill boxes, phone alert for Tamoxifen, shopping lists, To do lists, etc. Also I found this article useful, especially the bullet points:
I noticed it's harder to multitask and do things on autopilot like I used to, I need to focus more on what I'm actually doing, e.g. in the kitchen if I'm tidying up like a mad thing, I need to look at the thing I'm putting away or I might put it in the wrong cupboard. Memo to self: Don't do things on the fly. Slow down. And try not to obsess about it because that just makes it worse.
Hope you're feeling better
I keep my Tamoxifen on the kitchen counter and have it with my breakfast. I write the date on the packet so I know if I have taken it. Good job I read this thread because despite my foolproof system I realise I haven't taken it this morning!
I am also 52 years young so its definately not age !!! I like you i keep the pill box on good view, right next to the kettle which is rarely cold in my house, cant believe I didnt think of one before its ideal, see this site is brilliant for tips and help and also eases your mind when you see your not the only one losing the plot !!
Love L x
I got the pill box and its a great idea, I set it up for the week and so far have had to check most days did I or didnt I take the pill, problem solved if its not there I took it lol, memory still shocking .... Costing me as well now as keep double buying, today was t-bags which I had brought yesterday but forgot hey ho wont run out will I
Dollywood- glad your house is still in 1 piece !!
Love to all
Hi L , I Know what you mean about having a bad memory. I'm on tamoxifen and blame this for my bad memory. Last week i left my iron on all night in the spare room and only realised when i went in there the next morning, and smelled a funny smell. When I realised it was the iron, the handle had burned . So lucky, could've set the house on fire!!!!
Well ladies, this is interesting! I had triple neg bc so not on any tamoxifen etc so can't blame memory loss on that! I definitely think it's the chemo! Really find this quite challenging now I'm back at work, but my lovely class are very helpful at reminding me of what's happening/where I've left things etc!
Thank you ladies, Songbird thats a great idea I will get a pill box tomorrow, if I remember what I went out for that is 🙂 I joke about it but its actually getting scary... thought I might be close to dementia ! Maryland I am the same I can pull out a great letter or estimate but hardly string a sentance together and my husband is always finding the missing word for me , always on the tip of my tongue but stays there, well sorry to say this but I do feel better that its not just me, and Heva I am due to see onc in July to discuss wether to stay on tam or not its a scary thought coming off .... but will take their advice.... now where did I lose those marbles of mine 🙂
Love L xx
This is my first post on here, although I've been on tamoxifen for 4 years now and yes, my memory and awful! I struggle to think of the right words to use sometimes and often feel like I've been out on the beers because I've forgotten so much information! As good as the stuff is, I'll be glad to see the back of it and I'm counting down the months until I finish in April 2016! I feel your pain Lottie63...I think 😉
I finished active treatment in August 2012, chemo/rads and I am on Tamoxifen for the forseeable, now my memory is the pits 😞 its getting worse by the day so much that last night I took 2 tamoxifen as I honestly couldnt remember taking the 1st one so took another and then it slowly dawned on me that I had ! today I went shopping and couldnt remember if I had turned off a gas ring before I left, I had but came all the way back to be certain as I honestly couldnt remember .... Its getting a real worry as it seems to be getting worse and worse, is anyone else this bad ?