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Tamoxifen side effects

TopsyCarter
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Hi

I hope I'm in the right place on the web site and that someone can help. I had radio and no chemo but I've been on Tamoxifen for a few months. What has knocked me for six is not the usual side effects that I'm having quite badly but that I'm also having problems thinking and working things out and speaking and remembering things. I've been reading about how Tamoxifen can cause chemo brain on this web site and have found some research sites that talk about this. I am being treated but if anyone else has any experience of this I'd love to know that I'm not the only one. Thanks a lot.

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    Hi topsy,

    Sounds like you have had the same treatment as I have. I had 23 rad sessions

    And now tamoxifen for 5 yrs. I have the same problem, remembering etc

    I reckon the zapped my brain cells, lol. Also I have the hot flushes night sweats, and my monthly visit has stopped, only been taking them since feb, hope the brain thing gets better as I'm sitting some exams soon and finding it hard to revise. How long have you been taking them? Is there anyone else on this fab chat forum that can advise us both. Sorry not been much help really have I?

    Keep taking the tablets lol! Onward and upward!!!!!!

  • Offline in reply to smacaroonie

    Hi smacaroonie

    Thank you very much for replying!

    I've only been on the Tamoxifen for a short while but I've noticed changes and it's slowly and steadily getting worse. I can't think things through properly, I can't make sentences make sense easily, I lose track of what I've been saying, I sometimes say the opposite of what I mean. I now have to speak slowly so that my brain has time to work. The nurse said that this was normal!

    Here's some information that reassued me I wasn't going mad, hope they help you too. American Society of Clinical Oncology, Journal of Clinical Oncology Ahttp://jco.ascopubs.org/content/28/8/1294.abstract and Business Week http://www.businessweek.com/lifestyle/content/healthday/635927.html

    I'm really grateful to be on the Tamoxifen and doctors are going to try to slow down the effects so I'll post my progress on this chat page, but it's great that I'm not the only one! I hope other people get in touch too - sharing and togetherness really do help!

    Topsy

  • Offline in reply to TopsyCarter

    hi  smacaroonie and topsy

    i was put on tamoxifen back in june last year when i was diagnosed with stage 2 breast cancer . i should have had surgery 1st but as i was struggling to cope with a bitter divorce and sell my house the consultants thought it would be better to try and shrink the tumour with tamoxifen and zoladex injections .

    i found that my brain just went to pieces......that might have been caused by trying to come to terms with having cancer and the fight that lay ahead !!!! but i found it very hard to concentrate on anything .thank god for spell check as i still can't focus when i type .( although my spell check doesn't work on this site !!! )

    i had very bad hot flushes mainly at night , i started taking my tablets at night instead of during the day as i found hot flushes were easier to cope with during the day than at night ( i can be very grumpy if i don't get my sleep..ha ha ha )  i also put on about 1 1/2 stone in weight !!!!  ( but that was probably caused by siting around after my surgeries !)

    it took about 4/5 months for me to get used to the side effects , so don't worry it does get much easier with time and your body does get used to the changes ( also it's a bit of a relief not to have those " monthly visits "! one less thing to bother about )

    the main thing that i have found to help me get through this is this site . i don't always post but sometimes just reading peoples experiences helps . there is always someone ready to talk or listen .

    i hope that this has helped , please ask if there are anyother side effects that i have forgotten about !!!!!

    take care

    yvette

  • Offline in reply to runnerbean

    Hi runnerbean

    Thanks so much for this. It's really reassuring to hear it. I take ages to think, remember and to write so it's great to hear that over time you find ways round it even though it obviously doesn't get better until you go off it. The weight thing is awful too and so is the hair thinning. It's so great not to be the only one. I'm so sorry to hear about everything you have been going through as well as the cancer. It is so brave of you to still think about other people. I'm on my own too and it's hard with children too. Thank you so much for your words. They mean a lot.

    Take care. Topsy

  • Offline in reply to TopsyCarter

    hi Topsy

    Glad it has helped , think that when so many people are in the same situation it is nice just to be able to talk and some how that seems to make things a little better !!!! also by trying to help someone ( even if by only listening ! ) it takes your mind off your own problems ......as mad as that seems....ha ha ha .

    hope all continues in the right direction for you ,

    take care

    yvette

  • Offline in reply to runnerbean

    Hello all

     

    i am so grateful to have seen all your posts and comments. Thank you. At long last I know that I am not alone and the Tamoxfin effects are real.  My body has been through the mill this last year and I didn't know if it were a throw back to the chemo were chemo fog/brain was very real.  I have just been advised to change when I take Tamoxfin ie in  the evening.  Today is the first day in months that my head has been clear and hence googled side effects of Tamofin and found you.  Just about to take my supply but hopefully will have its full effect when I am asleep or having my nightly leg cramps!  

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