Forum Discussion

KLS72's avatar
KLS72
Member
10 years ago

cannot tolerate tamoxafen

Hi Ladies

I am seeking the opinions of others who have not tolerated tamoxafen....

I started tamox after radio  last year in April and managed almost 6 months but chose to stop taking it Oct 2014 and felt immensely better within couple of days and enjoyed feeling back to my usual self - first time since surgery in Oct 2013 (followed by chemo and radio). My dr was happy for me to take the break from it and suggested trialing it again on half dose. I  trialed again late last year and same again hated it so stopped and had not taken tamox since dec 2014.

 Again at the advice of my dr I have just started again on 10mg and once again feeling the same and think I will stop it....for good.

My symptoms seem possibly less typical that what I hear/read about others with tamox - it's not the hot flushes, these are minimal if any. But it is the feeling in my head of complete vagueness, almost like I'm about to come down with the flu, or jet lag that you just cant get rid of, tiredness and increasing anxiety.

I am 42, a mum to 3 daughters, youngest who is 9 and twins 16 and I just find i cant function as a mum (or wife!). Whilst I can cope with the tamox far better than I did last year I just feel so terrible in my head and I hate feeling like this!

My statistical benefits of tamox are very small and my dr has said that it was good I had the chemo ( as I was borderline to decide it at the time after surg - no lymph nodes detected) if i cant keep on tamox then that quality of life is a better benefit to me. 

Do any other ladies have any comments to help me with this decision - I would love to know if any of you experienced these head symptoms.??

Thanks!

tamoxifen

3 Replies

  • mona63's avatar
    mona63
    Member
    10 years ago

    Hi there not taking tamaxofin would mean under treating for me so I'm committed to it : but if it made little difference I would question it.  Initially I didn't have any issues and then they came up and then got better again.  I also take a low dose of Effexor and notice without that I have much more hot flushes and the like.  My oncologist has said I can take 6 week holidays from tamaxofin and although I havent: just the notion is nice and no doubt in the next few years I will.  Best wishes

  • June1952's avatar
    June1952
    Member
    10 years ago

    Hello

    Tamoxifen is not everyone's friend so don't feel alone !

    If your stats are low and the doctors agree then it is the best to make that informed decision.

    I have a friend who is having an 'alkaline diet' to assist her body so that may be something you can research and think about.

    Apologies in advance to those ladies who are totally against any natural ideas - please don't get cross with me for this suggestion !

    As Melissa said, maybe you can discuss the ovary side of things and have the opportunity to try other available drugs.

    Good luck with it all and keep in touch.

    Summer  :-)

  • Melissa_B's avatar
    Melissa_B
    Member
    10 years ago

    Hi! You are not on your own, my head feels like it is stuffed with cotton wool ! I'm vague , forgetful,tired, suffer anxiety and have mood swings from one extreme to the other and that's on top of some of the more " typical " tamoxifen side effects. And as a single mum I'm really struggling to cope some days.

    Then to add to it all my body decided that having my period on a fortnightly basis would be a good idea :)

    My oncologist has advised that it would be best to have my ovaries and tubes out which I am in a couple of weeks and I'll then go onto another hormone therapy( fingers crossed , without too many side effects) 

    Good luck with whatever you decide to do , know that you are not on your own, sending positive thoughts your way x

    Melissa