Effects of coming off tamoxifen after 10 years

Hi, I came off tamoxlfen in July after 11 years, I’ve not had any of the many other side effects mentioned. I am 58 and tamoxifen through me into menopause at 46. Since coming off tamoxifen I feel permanently exhausted and have what I can only describe as brain fog, I can also burst into tears in a second at ridiculous things. I was wondering if anyone else has felt like this.

  • Dear Kazma

    tamoxifen gave me the typical aged 40 years overnight/ couldn't stop crying/ hourly hot flushes when I started. Tearyness went off after a month but I gained 2 stones the first year. Nobody told me to but I just stopped ordering repeats after ten years in 2018, was expecting to feel some difference but not a thing. Good news, I lost a stone, bad news I had hoped the hot flushes would end but they are still every hour

  • Dear Hel39

    I had that diagnosis in 2008 aged 44, I was told that most pre menopausal tumours are grade 3, so try not to worry. I had the full range of surgery/ chemo/ radio/ tamoxifen and am now fit and well, saw my children grow up and now have a granddaughter. 
    Wishing you all the best for the future xx

  • Thank you so much. It gives me so much hope to read these posts. It was in four nodes after clearance - 2 micromets and 2 macro. Had a bit of a spiral after reading this and terms like 'lympho-vascular invasion' and 'extra-capsular spread' on my pathology report but trying to stay positive still. Start chemo in a couple of weeks.

    thabk you again. Means a lot.



  • I had 3 nodes and the lymphovascular invasion, don't remember any more details. It's a rough 9 months but you'll be good by Christmas :)

  • Thank you so much; it reassuring to hear x

  • Dear Gardengirl, it's really nice to hear you have been fine. I am hoping my experience will be the same. I have also put on 2 stone since being on Tamoxifen. I always try to eat healthy & was regularly exercising during lockdown. I didn't really lose any weight but I toned up. I had to stop around 4 months ago as I injured my neck, not sure how and am now seeing an Osteopath. I haven't put any weight on in the last 4 months but have gone a bit flabby  Fingers crossed I will lose some weight when I stop taking the tablets in October. 
    The hot flushes seem to bother me the most through the night. I have forgotten what it's like to have a good nights sleep. And just recently I feel so emotional. Have things improved for you? 

  • I'm still here! Same diagnosis as you, in 2012, at the age of 36. Just coming off tamoxifen now, hence why I found this chat...


    It's all hugely overwhelming at first - one day at a time, OK?

  • This was just what i needed this morning. On day 5 of first chemo and in a complete black hole of feeling it can't be worth it.


    thank you so much xxx

  • The first chemo is hideous - the body is in shock! They get a bit easier after the first one. Eat little and often, keep taking your anti sickness meds - metaclopramide is rubbish so ask your team for something better if you're still feeling rotten. It will pass, I promise x

    Plan something nice to do for the end of next week - always good to have something to look forward to, when you come out the other end of the cycle. We always had a nice meal out when I was feeling at my best, at the end of each cycle. Gives you something to head for...

    hang on in there, OK? It is most definitely worth it, even if it doesn't feel like it right now. One day done is one day closer to the end of treatment. 

  • It is hideous. 
     So you had grade three and positive nodes? I just feel so scared I'm going through this and it'll just come back anyway.


    thank you for your message. It's really kind xx