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Effects of coming off tamoxifen after 10 years

Lizzell
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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.

  • Offline in reply to Noahs_nan

    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. 

  • Offline in reply to Moderator Lucie

    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. 

  • Offline in reply to Yorkie14

    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 ️ ️ ️

  • Offline in reply to HopeafterC

    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. 

  • Offline in reply to Gardengirl

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

  • Offline in reply to jgrace

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

  • Offline

    I just came here to add my experience, which has been a bit more positive; I came off Tamoxifen about 5 or 6 weeks ago and have been okay since.

    I'd googled what side effects to expect (having been provided literally no information about it from the hospital), and this was the only place I could find any information at all. I was quite worried given everyone's experiences on this thread. I guess people don't generally write about more positive experiences. Anyway, I had no symptoms when I went on it (aged 43, already menopausal, following a mastectomy), and haven't had any symptoms since coming off. Possible deterioration of my long distance eyesight, but that could just be general ageing. Hopefully if anyone's about to come off and is reading this, then they may be a bit less worried, as not everyone has the terrible experiences. Sorry anyone has to go through these awful symptoms :(

  • Offline in reply to Sophie_C

    I have now been off tamoxifen 12 weeks. The only real side effect I have had is flushes . These were nightly for the first few weeks but have almost gone now.

    Went to doc to discuss coming off the tablets . He had no knowledge to assist me. Said he would make enquiries haven't heard anything. 

    While I was there they discovered I have a irregular pulse and heartbeat now. Awaiting a cardiology appointment. 

  • Offline in reply to rmscj

    I am so happy to have found this forum. I have always felt like my experience is peculiar to me alone.

    I was diagnosed in 2009 and started treatment in Jan 2010. After Chemo, radiation and chemo again, I was put on tamoxifen. I took it for five years, was still able to work twelve hour shifts. Even though I was tired, I just pushed forward because my children were still little. But in my sixth year, the tiredness became unbearable. I tried to go forward but had to give up work because I was constantly tired and had body pains and aches till date. When I stopped work, I thought I was going to be able to now stay at home, cook and clean as I did before even when I was sick.

    I was always afraid of failing and disappointing myself and people around me. When I stopped work, I realised that I didn't even have the strength to clean but could manage the cooking. It hasn't been easy for me because I always show the braver side of me. Now I can hardly do anything and barely can do the cooking at home which is like a chore. My children do help but its like they are not always happy doing so. I get anxious, flustered, tired, drained, stressed all the time. I took tamoxifen for ten years and went off it in Jan 2022. Since then, life is so difficult for me. I can't work because entering a car even makes me to throw up so I have to take anti sick medication everytime I have to go out. I sleep everywhere and when I sleep, I do not feel anything until I wake up suddenly. When I sleep, anyone can come around, do anything they want and leave and I won't even notice or realise someone came in.

    My husband and children don't understand and probably think I might be exaggerating because I look ok. So they just abandon everything for me at home as if to say I am always at home so all the chores should be done by me. I have tried to explain to them that I am not coping but they don't understand. I think that deep down they believe that I don't just want to work because I am being lazy.

    Has anyone had to give up work because of tamoxifen? Before I gave up work, I started alerting my husband two years prior that I wasn't coping anymore. Going to work everyday seemed like a nightmare. I couldn't cope on the bus and train journeys because I used to get so stressed. I became bitter and resentful towards people who couldn't understand my predicament. I do not know what to do when I feel people expect more from me than I can deliver. I can't have financial help from government because they will say my symptoms are not physical. If I apply to the job centre, they will harrass me constantly to look for work and I can't even help myself.

    I do not know what to do. I feel that I have failed everybody around me.

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