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,

I'm on Letrozole, because I am post menopause by a couple of decades.  I have all the side effects you mention, as well as quite bad osteoarthritis.  My doctor has prescribed Co-codamol for taking, as needed, during the day and Amitryptaline at night and it really is a life saver for me.  I don't have to take the full 8 tablets a day of the Cocodamol evrery day, I also take a calcium and Vitamin D twice a day, and folic acid once a day on prescription plus a magnesium and zinc supplement I bought myself, for the cramps and since I started I haven't had any of the horrible leg and foot cramps I used to get every night

I hope you are able to manage your symptoms better, I feel that once you get on the right combination of drugs and supplements life will be a bit easier!

Christine x.

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 Christine, 

Thanks for listing everything you use to help alleviate the pains. I have a hospital visit next month so I am going to ask if I could try any of these that you suggest and it could be a start. Deep down I know I really can't risk coming off tamoxifen so early on this 10 year course of it. If the side effects could be reduced then it could be a Start.

Thanks for the advice x

Hi,

I hope you get the right combination of meds and supplements. I know the hormone therapy is there to prevent the cancer coming back, but it's no fun being in pain for the ten years!  

I must say I was quite a baby about taking the hormone blocker at first, because of possible side effects, and only started taking them with the proviso that I would stop if they were too much to bear.  As it is, they are a nuisance but, with the help of my doctor, I can manage. In fact when I had a blood clot in my leg, a few months ago and had to stop taking the Letrozole for 6 weeks, while my BCN checked that they hadn't caused the blood clot, I felt a bit uneasy and was glad to start taking them again when they were given the all clear.

Best of luck,

Christine x

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.