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.

  • Yes please do. I'll do the same. 
     

    Take care x

  • Sorry that you're feeling like that.  I came off anastozole two weeks ago. Have brain fog really bad and tiredness. Nausea has stopped. How long do you feel like this? 

  • Hi Lizzell, I came off Tamoxifen last September after taking it for 10 years. I'm 50. The first year of taking it I felt dreadful, severe night sweats, hot flushes etc, but my body gradually got used to it and like everyone else, was a bit worried about stopping it after being on it so long. It's been my 'crutch'! 
    Well.. I've never felt worse... first few weeks nausea, (gone now but I'm easily put off food and then crave sugary stuff) and general body pain. I'm a Pilates teacher, and have had to half  my hours as my joint pain is horrid. I seem to be hyper sensitive to pain as well. I feel constantly exhausted, low mood, brain fog, poor sleep, and have got to the stage where I should probably see my GP. There's not much info out there on stopping after 10 years, as I know I was in that first wave of people taking it for 10 instead of 5 years. 
    Hope all you ladies feeling the same get some relief soon xx

  • Am I glad I found this thread! I stopped taking Tamoxifen 2 weeks ago on the day I was told I had a second BC s and was booked in for my 2nd MX. I've had brain fog and have felt so very sad as well as being unmotivated - these are all unusual things for me. I've even told people about it which is again unusual for me. I thought the symptoms were all because I was struggling with the diagnosis and impending operation but they could well be due to stopping the Tamoxifen. How long do the symptoms last? Take care everyone x

  • Hi beetlbug sorry to hear you're having a rough time of it too. Tbh im still feeling effects 4 months down the line I'm really hoping it levels out soon, I've been quite emotional not feeling  myself if you can understand. I've also piled a lot of weight on. One day I feel ok the next I don't really want to speak to anyone.  Ive spoken to my doctor about antidepressants as I felt that this might help but because I'm trying to have a baby she doesn't want to put me on them and she said hormones can take 3-6 months to level out...:cry: I really didn't think it would take this long to start to feel normal again but it is and I I'm thinking there must be something wrong with me. :cry:

    how have you been feeling?? I hope things have got better for you. :love: 

  • Hi Frannie

    Sorry to hear your suffering too. I am feeling a lot better now, Tiredness and fuzzy head have gone.  Still have anxiety which is worse in the mornings and loss of appetite, lost a stone in the last 4 weeks. I tried anti-depressants but hated the side effects and didnt seem to work for me.  Im taking each day as it comes and trying to get through as best I can.  Unfortunately every health proffessional I have spoken to say that coming of Anastozole has no side effects. Hope your feel better soon and good luck with the baby plans..

  • Glad to have found this thread.  I was DX in 2009 aged 37.  My treatment put me immediately into menopause and I've never had a return to normal periods (one every year or so).  I assummed it was the Tamoxifen.  I stopped taking it about 8 weeks ago, after 11 years whichwere relatively easy to deal with.  I was hoping for a return to normailty but instead I feel awful - and all my symptoms match with menopause.  I am tearful, irritable, hot flushes, achey, headaches etc etc. I am assuming that is what is happening, but there is so little information out there about finishing after so long on Tamoxifen that I am completely lost.  I have ordered a hormone test to see what my levels are and shall take it from there, but to be quite honest I feel utterly bereft by it all.  

  • I've stopped taking tamoxifen for 6 weeks after taking it for 4 years. I've tolerated it quite well and the effects of the menopause but I have felt dreadful since stopping it. I had an abnormal bleed after 15mths of no periods so had a hysteroscopy and they found a polyp. My oncologist wants me to have some bloods and I needed 6 weeks without the tamoxifen. I've plummeted into a horrible state of feeling so low, tired and completedly depleted of energy and emotions. 

  • I've been on Tamoxifen for 11 years I'm now 56. I've stopped  tamoxifen for 2 weeks now. It's reassuring to see these posts. I feel nauseous, very hot all the time, brain fog and extremely tired. Hoping this wears off over time

    For me the side effects of tamoxifen/menopause have been tough - obviously very grateful not to have cancer but give us a break!! I thought stopping tamoxifen would reduce the side-effects - tbh my GP doesn't really know how to help. 

  • I have found this thread an interesting read and just wanted to add in case it is useful to anyone.

    I was prescribed Tamoxifen recently and lasted a week in it. After a few days I had really bad fatigue, I was falling asleep all the time during the day and just felt dreadful. It was almost like chemo symptoms. I've had an outbreak of spots all over my face neck and chest and have had terrible night sweats. I was also in a lot of pain all over.  I've been off it a week and the fatigue disappeared immediately, the pain has lifted and I feel much better. 
     

    Im 37 and am on the Zoladex injection so my periods have stopped and I'd get mild menopause symptoms from that but the Tamoxifen made things much worse immediately. I spoke to a nurse about it at the hospital and she said she'd heard people say they felt like they'd aged 30 years overnight after taking it. 
     

    This medication just didn't work for me but I have also spoken to people who are OK on it. Just wanted to share another experience.