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.

  • I'm 71 and I came off Tamoxifen after 10 years six months ago and I'm having exactly the same problems as you.  No side effects while taking it, but experiencing all that tiredness, sore eyes, irritability and very low moods as you describe.

    I also have developed a lot of variable joint pain, never know what is going to ache from day to day and my memory is becoming very erratic.

    This is the first time that I've considered that it might be the after effects of the Tamoxifen. I was beginning to think it was just age, but it's all happened in the last 6 months.

    Does anyone have any idea how long this may last? 

  • Offline in reply to EAC71

    Came off Tamoxifen after 10 years. Feel exhausted and irritable. Sleeping a bit better, which is good. Glad I started reading your comments. Was wondering if it was in my head. At least it’s not just me. Fingers crossed it will get better. 

  • Hi Lucie (and Lizzell), I stopped Tamoxifen a couple of months ago after 11 years. I have some of the symptoms described on this forum - mainly extreme fatigue and headaches. How long is it likely to be until I feel better? I was given no warning of the effects of stopping Tamoxifen by the breast cancer specialist who suggested I stop the medication. 

  • Hi all, I had stage 2 breast cancer, her2 positive 5/8 estrogen and progesterone positive at age 32. I had a double mastectomy,  chemo, herceptin and Tamoxifen for 10 years. Reconstruction surgery took several years.

    I finished Tamoxifen June 2023. The fear of coming off it made me very anxious but counselling and a short dose of mild antidepressants helped me tremendously. 

    Apart from normal life illnesses like cold and flu germs like I have today, ive noticed over the last couple of weeks I've actually felt like my old self pre-Cancer. Much more energy, less brain fog, confidence returning and mostly feeling braver to plan for the future rather than fear it.

    I eat very healthily, dont drink much (2-3 units at most a week, sometimes no alcohol for a few weeks). I exercise regularly a mix of yoga, weights, cardio and swimming for a good balance. Exercise helps my mind as much as it does my body.

    I do find a daily prebiotic is key for a healthy gut, Cod liver oil with vitamin d for brain and bone health, magnesium with zinc and calcium helps with sleep and bones plus a supplement called Propolis for a healthy immune system. So if I'm unlucky and Cancer returns, I know I've done everything I can to stay healthy so will be more mentally strong to deal with it. 

    Wishing you all the very best ️ ️ ️

  • I have been on tamoxifen for 10 years thinking I should wean myself off them rather than stopping it completely.  Any thoughts? While on it I have had extreme flushes and mood swings. 

  • Hi.   Did you lose the weight from dieting or having stopped tamoxifen  x

  • Hi I am also getting nausea - did it go away?