Cognitive impairment

[ElleeB]

We laugh and joke between ourselves and friends about ' chemo brain' but I intrigued - I am 5 years in remission and 5 years into 10 years of tamoxifen - my cognitive ability since chemo has been consistently rubbish and I have seen little improvement in it ( I am or was an intelligent woman - but these days I wonder if I have a brain) Anyone else feel the same this far down the line . Like wise with severe energy dips and mood crashes after busy or active days

[Jennymary]

Congratulations on being 5 yrs in remission, not able to comment on 'chemo brain,' as I had radio only

[linlow]

Chemotherapy is notorious for causing this type of damage. Known as chemo brain or fog, the damage may be permanent. Tamoxifen is also noted to cause similar impairment to the ones you describe. urmc.rochester.edu/news/sto...

Turmeric can be used as an adjunct therapy (but you would have to discuss this with your doctors) during cancer treatment. Turmeric has a beneficial effect on the nervous system and can actually restore damaged areas in the brain. life-enhancement.com/magazi... Turmeric has many healing properties healthcareaboveall.com/here... though I would recommend using the fresh root for most conditions. Ginger in some ways has a similar but complimentary effect. It might help restore some mental clarity to your life.

[ElleeB in reply to linlow]

HI there. Thank you for the links. Am going to have a good read. Turmeric is interesting - might have to wait till I return to UK ( currently living in Buenos Aires) to discuss with consultant - but I can use the root ginger I guess. I will try anything to be honest. I know its probably going to be this way all the time I take Tamoxifen - but it is frustrating. Really appreciate you replying

[linlow in reply to ElleeB]

Do you have any gut problems at all? There is a very close link between the gut and the brain with problems in one evidencing in the other. A bit difficult to make kefir or sauerkraut whilst you are travelling but I wonder if supplementing with probiotics of some description might help.

[1508]

Hi I am six months into an anastrozole and just over Half way to finishing herceptin following mastectomy chemo and radiotherapy and know exactly what you are dealing with it's the new us but so frustrating but onwards and upwards stay well

[Hidden]

Sometimes I know what I want to say,but can't think of the correct words,and when I've been busy or get tired I do get rather grumpy and have a short fuse,but the worrying thing is I've not had radio or chemo,so no hope for me then,just have to laugh it off as old age,56.

[Annie69 in reply to Hidden]

Haha Parker! You and me both. I fell over and banged my head a year ago and I'm still waiting for post concussion syndrome to wear off so I can walk in a straight line again. I can still do sodukos (sudokus?).

Annx

[Hidden]

I'm 68 and never know whether my 'memory loss' is due to old age or my treatments over the past 6 years. I have chemo, an anastrozole and, for the last 18 months, Fulvestrant + radiotherapy twice.

[Artemis-angel]

I'm six years after chemo now and as you say I am sure that I do not have the long term powers of concentration that I use to. I still get energy dips after a busy day but not sure if that is the chemo or the zoladex. If I have a very busy day I rest up a bit the next day.

[ElleeB in reply to Artemis-angel]

Relieved to hear you say that. I don't know of anyone else who gets the energy dips. I have to rest up and I don't like it. I used to be so active. Insomnia doesn't hep either and I am sure that is the Tamoxifen!

[Hidden]

Hi ElleeB, I had chemo and radio seven years ago. I'm six years into Tamoxifen as well. Now, I had some brain damage due to a road traffic accident 12 years ago, but the chemo and radio just wiped the floor with me. I find it difficult to read more than a paragraph at a time, I can't remember anything, I sleep all the time, etc. I'm in Open University studying psychology (which I was doing full time before the RTA and getting super grades), but I'm getting sorry marks now because I can't remember enough to pass the exams by much. My essay writing skills have disappeared as well. It's all terribly frustrating, I KNOW I'm smarter than this!

I was under the impression that chemo brain would leave shortly after the chemo finished. I had no idea it could last this long. I totally get your frustration and worry. Hopefully after we both finish the Tamoxifen we'll get back to our normal selves.

If you ever want to chat about it, just message me.

Cheers, Kat

[ElleeB in reply to Hidden]

That was a pretty inspirational message thank you! If you can find the will to continue studying on top of a road accident too - then I can find something to focus too. Don't fret over the grades just feel proud of yourself for having the resilience to keep with it!! I didnt have a road accident but had 2 fits last year and a nerve wracking couple of weeks of tests as they feared the cancer had returned to the brain. Thankfully it had not but in one fit I fell down a whole flight of stairs and sustained two head injuries. I now suffer constant head aches and moments when I cannot find words or remember what I was talking about. So I know its a combination of Tamoxifen, Chemo and the head injury - but that feeling of being a shadow of my former self gets to me and I know I have closed down emotionally to try and block the feeling!

Would like to keep in touch! I am currently living and travelling in Argentina - Things really got to me and I gave up my job and everything to take a break and try and recharge. I am enjoying my time out here and meeting loads of new people etc but sometimes I feel alone with this and people just don/t get it.

Stay strong and keep studying ....

[Hidden in reply to ElleeB]

Hi Ellee,

Gosh, I'm blushing :). Thank you for your kind words, they mean a lot. But you've gone through pretty much the same thing with that fit that threw you down the stairs. Have you been investigated for brain injury? I would contact your GP asap if you haven't. Those headaches and memory problems are pretty major symptoms of Acquired Brain Injury. Very similar to what I've had, except my auditory memory got damaged so I have a hell of a time memorising stuff unless I draw it (converting it to visual memory).

Wow, Argentina! I used to live in Ecuador, amazing place. Bit far from Argentina though :). Travel to other countries is great for your brain when you actually live there a while. Especially when it means learning a new language. It takes a lot of courage to make a move like that, be proud of yourself!

I'll contact you and give you my details. I'd love to chat more.

take care, Kat

[ElleeB in reply to Hidden]

Just to re assure you. I had all sorts of scans and tests and everything was clear. I get the headaches now if I am really tired and well the memory was rubbish before hand too. I am reasonably well now so planning to stay that way although I did face plant in the middle of six lanes of traffic earlier this week when I failed to see a pot hole! Will find you on facebook etc

[Annie69]

Hello Ellee.

Hey - my brain is like that and I haven't started treatment yet. Well, 3 days into 6 weeks of Letrozole before surgery. However, I do take Methotrexate for something else. Perhaps that's it!

Annx

[ElleeB in reply to Annie69]

Hi Ann - thanks for commenting - you have a tough time ahead - go with it - it's a roller coaster of a ride but you will find positives and inspiration on the way ! Your brain may never recover but like all of us you will come out a different and stronger person good luck

Elaine

[louisa73]

I completely agree i'm 2 yrs in remission and 2yrs into 10 of taking tamoxifen. I feel like i have no brain at all after chemo and my memory is terrible. The ups and downs of tiredness too but dont always sleep well so guess that doesnt help but i'm still here and thats the main thing and i have a lovely husband and children to help keep me sane.

[Moirs1964]

Hi Ellee B, congratulations on 5 yrs! I'm nearly 3 years and am still "brain dead"! I can't take tamoxifen as I'm allergic to it (20% of people are) so I just keep a close eye on things. I have discovered Omega 7 sea buckthorn after having tried everything to balance my moods and it's great! My humor is much more better (much to my family's delight) and my energy levels have also risen. Well worth a try

[ElleeB in reply to Moirs1964]

Hi there thank you for the recommendation - I think my family would be happy if I found my humour again. So do you not take any alternative to Tamoxifen?? I think I forget sometimes just how powerful the drug is with its side effects and think I should be fine when perhaps it's simply not possible !

[Moirs1964 in reply to ElleeB]

Hi again, no I don't take any alternatives to Tamoxifen. I tried all types recommended by my Oncologist but I had a bad reaction to them and some I can't take as I have osteoporosis (due to chemo) so I now have an annual ovarian scan, a 3 monthly blood test CA125 and regular breast checks. I also exercise more and eat very well. It's taken me 3 years to get to this stage but I do now feel really well and am enjoying myself again. I highly recommend the Omega 7 - they won't do you any harm!

[Lee54321]

Hi Guys, I'm 12months over chemo, on taxmoxifen, which I hate, sore joints, tired. I feel l ike I'm an old woman even to turn at night I need my partners help. However, I started Zumba classes 4 month ago, and go 4-5 times a week. I do it at my own pace (lots of breaks) However I have found remarkable changes to my body. I have been on holiday for the past 2 weeks and have had no zumba, I know feel like that old woman I previously was (I'm 45) I never did excersize before, so this has REALLY helped. I spoke to a doctor pal of mine while I was hear (in spain) and she told me that new research PROVES that excersize is the number one 'drug' you can take after having Cancer with all its treatments to help prevent it again! Ladies I so would encourage you ALL after treatment has settled to join regular sport classes.

[ElleeB in reply to Lee54321]

I think this is so true! In uk I walked and did year round river swimming - here in Buwnos Aires I wouldn't swim in any water if someone paid me. I try and walk everywhere though and do a bit of yoga !

[lovesradio]

Almost 9 years on from chemo, 5 years tamoxifen and now on letrozole and I still have chemo brain or it's age, just turned 62. My colleagues laugh at me, numpty of the year award!

[ElleeB in reply to lovesradio]

Numpty is exactly the word I use for myself too! Guess I have to live it a few more years !!! But if I am alive and otherwise well then so be it! Have you conquered mood swings or did they stop after you came off tamoxifen.

[lovesradio in reply to ElleeB]

Um, no mood swings just a bit weird till I got over the menopausal symptoms. Found drinking plenty water and avoiding caffeine helped as well as exercise, especially zumba at the time as it was such a laugh!