side effects of tamoxifen

I had breast cancer almost four years ago. I have been on all the anti-hormone drugs but the side effects have been really severe. I have now been on tamoxifen for three years and the side effects keep increasing although I was told that my body would adjust in time. It is like a tick list for almost everything.  I really am trying to deal with it all but am feeling very depressed that things are getting worse, especially as I was advised to take tamoxifen for ten years. I hve been given some asvice but exercise is difficuly due to severe joint pain. I am also suffering hair loss and weight gain on my abdomen, to name a few. I would appreciate any advice.

  • Hi belle18

    I was diagnosed back in 2018 and placed on tamoxifen. I only lasted 9 months on it due to the side effects. Thankfully I was post menopausal and therefore changed to Anastrozole. It also came with side effects but they were less than tamoxifen and managed to tolerate it. I was taken of Anastrozole 6 months early due to a dexa scan showed bone density loss, which is a side effect of Anastrozole. 

    You don't mention your age or if your near or going through the menopause so not sure if you're a candidate for Anastrozole. I do however remember when I was taking Anastrozole, there was a brand that suited me better, so perhaps asking for a change of brand may help.

    I suggest you have a word with your GP and go from there.

    Fingers crossed this will get better for you.

  • Belle iM also 3 years on tamoxifen I suffered bad for two and a half years the last 6 months side affects seem to have disappeared, my weight gain crippled me so I joined a gym and recently lost 2.5 stone this had helped me massively . 
    I also take lots of supplements and I now feel brand new hopefully this will happen for you soon xx love Lara take care x 

  • Hi there and thanks for the post

    I am sorry to hear about the past treatment you needed for breast cancer and how the Tamoxifen is affecting you.

    It is really important to let your doctor know how this is impacting you so they can assess you and your situation. Most women do get used to taking Tamoxifen but others don't and sometimes a switch in brand can help.

    I don't know how old you are but unfortunately as women approach or are in the menopause phase, women often will experience a range of possible symptoms as hormone levels change. These can include weight gain around the middle, joint pain, hair loss and so on. And of course it can be a challenge to manage these. I'm afraid Tamoxifen can also trigger or speed up this process. We have some information and suggestions of coping with sex hormone symptoms on the website, so do take a look.

    As I say I would discuss this with your doctor so they can suggest the best way forward for you. They may consider a switch of the brand although the symptoms you are having are more suggestive in the drop in hormone levels, which is likely to be the same regardless of the brand I would have thought.

    Speak with your doctor and see what they have to suggest.

    Do get back in touch if you would like to or alternatively give us a call on 0808 800 4040, we're here week days 9-5.

    Take care

    Naomi

  • Offline in reply to laraj

    thank you so much for the information. You mention supplements. Could you tell me which ones have helped? I have been on tamoxifen for three years and symptoms are still worsening and because of the joint pain I find exercising virtually impossible bur am still researching different ways. Thanks x

  • Thank you so much for your advice. I am well past menopause and have been on every tablet, ending on tamoxifen as I was advised that the side effects would be less but I would have to take it for ten years. That has certainly not been the case for me ans I have really suffered. Do you remember the brand name? That information would be very helpful. Thank you.

  • Offline in reply to belle18

    Hello lovely 

    I taje high strength omega 3 fish oils helped me come from a 80 year old woman back to my age , also sage for flushes they have disappeared day and night feel back to the old me now x 

    check with your oncologist first as I checked with mine and was ok to take the supplements.

    good luck xx 

  • Belle 

    what brand do you take of tamox 

    I will only take one brand only which are tilomed brand the others were horrific for me x 

  • Sorry but I don't remember the brand. I tried searching my posts on here but it only goes back 3 years and my dx was 7 years ago.

    I would caution you and others not to dismiss the joint pain believing its a side effect of tamoxifen. I repeatedly presented to my GP over the years with joint pain, the GP got in touch with my breast team who advised that it was a side effect and was and still am prescribed pain relief. I thought the joint pain would ease after stopping hormone treatment but it didn't and got worse. 7 weeks ago I demanded an x-ray. My GP got in touch last week to tell me she needs to speak to me about the x-ray results. I have a feeling it's not good news and will know tomorrow when we speak what the damage is. Don't let that happen to you.

  • Maggie 

    sorry to hear you are still having joint pain hopefully all turns out well for you love Lara xxx 

  • So sorry to hear that you are still suffering joint pain. I did have symptoms before breast cancer but it increased dramatically after starting treatment and has gradually got worse. I know several ladies in my area who have developed similar problems, in particular rheumatoid arthritis and fibromyalgia which they did'nt have before. There are some thoughts that it can be triggered by trauma and major surgery so please insist on more tests. It really is a minefield. Please let me know how you get on. Knowledge is power. Thinking of you.