Exemestane - coping with side effects

I realise this has been discussed before but it appears to have been several years ago.  In the interim I wondered if anyone else out there can identify with my situation.  I've recently switched after a year on Tamoxifen to Exemestane and I wondered if anyone had any advice on dealing with the side effects. The pain in my ankles at night is unbelievable and is keeping me awake for hours on end but I don't suffer too much during the day, is this usual?  I'm experiencing swelling of my hands and feet, I'm struggling to get rings on and off and despite a recently purchased pair of training shoes fitting perfectly well when I bought I'm now struggling to get them on my newly inflated feet!  Has anyone else experienced such swelling?  Has anyone else found that the side effects are worse the following morning if you've had alcohol the night before?  Apart from the above I'm getting hot flushes again (and excessive sweating) I did get them with Tamoxifen but they seemed to calm down towards the end of the year.  Are these likely lessen after time with Exemastane?  I do several exercise classes a week and although my sweating makes it look as though I've impressively worked harder than anyone else, it is slightly embrrassing ( and not very attractive)! I agreed with my GP I'd experiment by trying a few things i.e. taking high dose Glucosamine, ditching alcohol, tea, coffee and try to drink 3 litres of water a day and report back in a month.  At the moment I'm not sure I can do another month, and before long I'm going to be evicted from the marital bed to the spare room as the husband is complaining about HIS sleep depravation, for goodness sake!! Any advice out there?

  • Hi. Did you get a reply to this post? I have been on exemestane along with monthly zoladex injections for nearly a year now. I struggle with joint pain and terrible hot flushes and night sweats. Acupuncture helped for a while. The only thing that seems to ease my side effects are cutting out all sugar and caffeine. Totally avoiding alcohol. Not eating spicy foods and increasing the amount of water I drink. I snack on dried soya beans and have cut out dairy. Running definetly helps. Not much fun but it seems to work. I always regret if I go back to my old ways as the symptoms come back. Did you get any help from the Dr? When I spoke to my breast care nurse she just offered me antidepressants. 

  • Hi, I didn't get any replies (apart from yours, thank you!) I tried for 3 months on the Exemestane before having a mini meltdown, it was seriously effecting my quality of life.  The GP sent me back to my oncologist and he put me back on tamoxifen for 10 years. I still have some joint pain but I am 57 so I have a little bit of joint wear and tear here and there but I'm back at all my exercise classes and cycling fairly long distances, so life is much better!  I'm happy on the Tamoxifen and although I got through my entire menopause without a hot flush I do get them now but not as badly as with the exemastane.  I agree with you that symptoms do improve if you cut out refined foods,caffeine and alcohol (a couple of glasses of wine and my joints are very sore the next day anyway) but it's hard not to lapse back. I find that breathing exercises help take some heat out of the flushes although I still sweat buckets during exercise.  Have you discussed your symptoms with your oncologist?  That's really bad luck that you have to take two meds both of which come with awful side effects.  

  • Hi there - sorry you're suffering. I think you need to pester until you get a tablet that suits you!
    I'm not allowed tamoxifen becaase of blood clotting risk + was initially put on Anastrosole. OMG I felt like my ankles would give out at any minute, I had to come down stairs one at a time + generally crept about like soneone intheir nineties (I'm 54!) All my joie de vivre totally evaporated + Himself was on standby with buckets at night because I sweated so much (ok, slight exaggeration there!). I persevered for a year but couldn't go on. My lovely breast care nurse told me to stop taking Anastrosole for a couple of months (she assured me it would be perfectly safe). Once it was out of my system I started on a half dose of Exemestane, one every other day + after a month upped it to the standard one a day.
    I feel like me again, night sweats are rare and although I have some pain in my ankles, it's a 2 to Anastrosole 10. So as I say, ask to try something else to see if it works better for you + good luck.