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.

  • Congratulations  zanne 66 on finishing tamoxifen. I took my last tamoxifen new years eve 2020 after 10years. Feel abit emotional but will see how we go. All the best.

  • Congratulations and well done. Yes it's horrible isn't it. All the very best to you in the future. Take care

  • Hi, I've just come off tamoxifen this new year having been on it for ten years. I was 48 when diagnosed. The main issue for me with tamoxifen was flushes and polyps, which I had surgery to remove. 
    I've only noticed one comment on here saying about feelings of nausea since coming off the medication. I have felt off balance and nauseous since yesterday and today I've been vomiting. Just wondering if this is a result of finishing tamoxifen after 10 years. I'd be interested if anyone has experience of this. 

  • I came off tamoxifen after 10 years two weeks ago and I have felt weird! Tired, spaced out, unbalanced, I can totally forget what I'm doing in the middle of doing it! Not ideal when you're trying to start a new business. My body aches and I feel like I have chronic fatigue symptoms similar to which I had 20 years ago.  I'm 50 but feel more like 80 and it's only been two weeks...no, I wasn't told about side effects of stopping tamoxifen either. But anyway, well done ladies. It's been a helluva journey! 

  • Hi everyone 

    Im so so glad I found this post, I feel like I've been going mad the past few weeks. 
    I stopped taking tamoxifen on 29Jan21 after being on it for just over 4 years and I've been feeling completely out of sorts and I couldn't find any answers as to whether it was cause I stopped tamoxifen or not, I spoke with one of the breast care nurses who said she hadn't heard of any side effects when coming off tamoxifen so I thought I was going mad, but luckily I've found this post and other ladies that have experienced what I'm feeling & I feel like a weight ha been lifted.  
    Some of the things I'm experiencing are ....very emotional, crying at absolutely nothing, my body is aching especially my lower abdomen & back. My left breast where I had the lumpectomy is aching and I feel miserable and really tired all the time.  
    Are any of you feeling the same and how long does this last?? My poor husband doesn't know what to do  bless him. 

  • Hi everyone

    I'm 65 and came off of tamoxifen 6 weeks ago after taking it for 13yrs. I had no side effects whilst taking it but since stopping I have felt generally unwell, suffering from joint pain, fatigue and blurred vision.The problem is I started taking medication for type 2 diabetes the same week I stopped the tamoxifen and I'm unsure which is causing me the problems. I have decided to give it 3 months, to allow the tamoxifen to leave my body and the new tablets to settle before seeking advice from my gp. I feel like I've aged 20 yrs in the last few weeks and it's making me pretty miserable. The lockdown situation isn't helping, not being able to go out and about means i've had a lot more time to think about how unwell I feel. I'm just hoping things improve with time.

     

  • Hi, I am coming to the end of 10 years on tamoxifen, having had breast cancer in 2010. I've had night flushes, which improved overtime but no other side effects while I took it. Having read the previous posts I feel quite nervous about coming off it. 
     

    Did anyone stop taking it gradually or did you just stop? And has anyone that's had these side effects of withdrawal come through  the other side. It would be good to have some idea of a timescale. 
     

    We've all come a long way, well done everyone and I hope that you all feel better soon. Xx

  • I was advised to stop taking tamoxifen in February 2021 but I  feel quite nervous about stopping.  I feel it has protected me for 10 years.  I still have some left so I haven't actually stopped yet but decided today that I had taken the last one.

    Not had any real issues whilst taking tamoxifen but feel unsettled about finishing it altogether.

    is it normal to feel like this?

     

    it certainly has been a journey for us all, let's hope for a better 10 years ahead!

  • Hi Sogno, 

    yes I know how you feel. I think I felt the same when my hospital checks ended after 5 years. I have arranged a telephone chat with my GP to discuss how to finish. It's the final step on our journey! 
     

    I hope that it goes well for you. I guess if we do experience withdrawal side effects to contact our GP to see if anything can be done to help us through. 
     

    Wishing you well. X

  • Thanks so much

    Good luck and I'll post again to give update on coming off tamoxifen x