One thing I forgot to ask at a recent appointment is do the side effects go after the 5 years of taking the tablet. I had swollen feet and legs over the summer and was told to come off the tamoxifen while I was checked for blood clots. Luckily it wasn't that. I am now taking the tamoxifen again but muscle weakness is annoying me, hot flushes and generally feeling not well. I have 2 more years to go on the tamoxifen but wondered if the muscle weakness will be permanent. I'm assuming the hot flushes will end. My legs aren't swollen now which is a bonus and was maybe to do with the hot weather.
I have tried Letrozole to start with but the muscle weakness with that was so bad I could hardly walk. I don't think there are any other options
Hi
I'm in my 1st year of 7 taking Tamoxifen (started February of this year) and the side effects are extreme. My GP said to keep going after conferring with the cancer team. I get awful hot flushes and now cold sweats as if my body can't regulate it's temperature control
.I don't get muscle weakness but restless legs and muscle spasms, usually when I lay down or put my legs in an elevation. I still get sickness/nausea and extreme tiredness to the point I still need help at times but found my sleep drastically reduced. Used to be a 12hr sleeper, now a 3 or 4 hr if I'm lucky. I don't know if anyone has experienced this?!?
I've also found that, although I didn't get neuropathy during chemo, It's really bad now in toes and finger tips!
Let us know if it does get any easier
Take care of yourself
Luckily I didn't need chemotherapy. I just had a lumpectomy and radiotherapy, then the letrozole for less than 2 years before it made my mobility bad. I've been on the tamoxifen since then and now you mention it I do wake up loads during the night. I used to sleep well. The other thing I've noticed is that I get quite bad tempered sometimes and that's just not in my nature. I'm usually very laid back. I'm worried these changes might stay with me even when I finish taking the tablets.
Thanks for replying and sharing your symptoms
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