Tamoxifen when not gone through menopause

Hi,

I have been on tamoxifen for 10 months. I haven't went through menopause. I feel as the months are going on the side effects are becoming unbearable. I have constant muscle aches and joint pain all over, feet,hips, elbows and hands. At night my legs constantly cramp. The flushes are horrendous. I honestly couldn't say the last time I slept all night. I have tried 4 different brands of tamoxifen now and I don't think one is better than the other. I have also tried taking it in both the morning and the evening. It made no difference at all. I am ready just to stop it and at least maybe have a better quality of life. I don't see me tolerating feeling like this for 10 years. 

Has anyone any suggestions of anything i can do or any supplements I can use to at least minimise the side effects. All the doctor prescribes is cocodamol and I don't really want to be reliant on pain relief on a daily basis. I feel if I don't find something to help me the only option left will be to stop the tamoxifen. It's a risk I know but when quality of life is so poor what other option is there?

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  • Hi, so sorry you're having such a rough time. Is it your hospital team or your GP advising on cocodamol?

    I'd ask your hospital team if you could have an appointment about the Tamoxifen and how it's affecting you, that you're thinking of coming off it and wish to discuss that. And I wouldn't take cocodamol long term either to fix the pain. A lack of sleep and daily pain is bound to make your mood low, to say the least. 10 months is a long time to suffer that. 

    No other alternatives to Tamoxifen? I know there are more options for post menopausal but not sure if you're anywhere near to menopause. You won't be the first not to tolerate it so I'm hoping your team can give you the time to talk over options.  Good luck! 

     

  • Hi,

    Thanks for responding. It was my hospital team that suggested a pain killer to be used alongside the tamoxifen. I have been prescribed both solpadol and cocodamol but they make no difference.  As I am nowhere near the menopause the options are very limited. Its a case of have a poor quality of life for the next 10 yrs and reduce the chance of recurrence or have a better quality of life but then the odds of a recurrence are likely to go up. None of the options are a good choice.  I am def going to ask for other options as there must be something at my appointment next month.

    Thanks again for taking time to reply 

  • Hi, 

    That's the trouble with most of these treatments right?  Risks versus benefits and sadly never just the a win win choice to make. But we have treatments which should be a good thing. I hope your hospital team can help you manage the pain symptoms then as that must be wearing for you. They advise not to just suffer any side effects after all, that they're there to help us. So I'd give them another try for sure. I don't know if you have a cancer hotline number like me but that's also to be used for managing side effects. And I was told recently it's not just for chemo side effects. Best of luck to you and hope to hear how you get on. 

     

Reply
  • Hi, 

    That's the trouble with most of these treatments right?  Risks versus benefits and sadly never just the a win win choice to make. But we have treatments which should be a good thing. I hope your hospital team can help you manage the pain symptoms then as that must be wearing for you. They advise not to just suffer any side effects after all, that they're there to help us. So I'd give them another try for sure. I don't know if you have a cancer hotline number like me but that's also to be used for managing side effects. And I was told recently it's not just for chemo side effects. Best of luck to you and hope to hear how you get on. 

     

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