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Tamoxifen side effects
Hi I read here for advice but very rarely enter the discussions. But I find myself really needing some advice.I was put on tamoxifen in 2016 after my op and chemo and radiation and have just been putting up with the side effect of being extremely confused somdays it's worse than others, I was put on letrozole earlier this year but after a few months I had no option but to ask if I could stop because it was causing me joint pain.
So I'm taking the tamoxifen and some days am extremely confused,well most days , my husband is getting frustrated with me forgetting things and has told me I need to tell the doctors and get the dose lowered, I have told the doctors I'm getting some confusion but I didn't really push the point as I don't want to take the letrozole ( my hip is still aching after taking it ) My mother had dementia and it scares the crap out of me, am I getting dementia, I'm going to my local doctors on Thursday for a test ,do I discuss this with them? Usually when I go to the doctors I just smile and tell them everything is fine especially if I think there is nothing that can be done. Has anyone else had confusion as a side effect and was or can anything be done to help. Please help if you can as this is doing my head in.
So I'm taking the tamoxifen and some days am extremely confused,well most days , my husband is getting frustrated with me forgetting things and has told me I need to tell the doctors and get the dose lowered, I have told the doctors I'm getting some confusion but I didn't really push the point as I don't want to take the letrozole ( my hip is still aching after taking it ) My mother had dementia and it scares the crap out of me, am I getting dementia, I'm going to my local doctors on Thursday for a test ,do I discuss this with them? Usually when I go to the doctors I just smile and tell them everything is fine especially if I think there is nothing that can be done. Has anyone else had confusion as a side effect and was or can anything be done to help. Please help if you can as this is doing my head in.
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13 Replies
- @Rose18 @Jandy232 thank you very much for your response. Appreciate being able to hear that it may not be too bad to stop taking Tamoxifen! Looking forward to the 'haze' of the tablet being lifted after 10 years :)
- HI @Emma, I did not find that coming off tamoxifen lead to any mood swings or emotional feelings at all. My only unusual emotion was pleasure in not taking the damn pill everyday. The only real differences I noticed were (as I said in my previous comment) that I felt a little clearer in my thinking. I think also my hair has thickened up a bit. My periods have not come back but then I'm a lot older than you (51 when I stopped, 52 now) so I wouldn't have expected that at my age. I think all these side effects - when you're on it, when you come off - vary so much from person to person. Perhaps being so much younger, if your periods do come back, you might expect the mood swings and so on that come with the normal hormonal ups and downs of the menstrual cycle to return. I think I was pretty lucky that I had no serious side effects with tamoxifen so coming off it has not made much difference. So sorry that you had to suffer this awful disease at such a young age by the way. Life can be very unfair.
Hi Ladies,
I put this post up in the young women's discussion but after reading this discussion I feel like people may be able to help me with a few of my questions regarding Tamoxifen too.
I was diagnosed in 2009, at age 22. I was initially placed on Zoladex injections while in 'active' treatment (chemo/radio etc) then put onto Tamoxifen. At my 5 year oncology appointment (when I thought Tamoxifen would be done and dusted!) I was told there have been further studies to show its beneficial to stay on Tamoxifen for 10 years post breast cancer. My 10 year oncology appointment will be July next year (2019). I am wondering a couple of things:
- Did other women return to a normal period cycle on Tamoxifen?
- Did other women come out of early menopause on Tamoxifen?
- What was your experience ‘coming off’ Tamoxifen? (I have heard this can be awful regarding emotions, mood swings etc)
- What were some of the side effects other women experience whilst on Tamoxifen?
Would love to hear from you!
- @Brenda5 you might like “Naked ginger” ( uncrystallised) available in supermarkets where the dried fruit is - one of my favourite treats plus good for joint pain I gather.
- I took tamoxifen for five years and came off it a few months ago. Just before I finished my oncologist said to me that most of her patients feel like a fog has lifted once they come of it. So foggy brain must be very common on it. To be honest I did not find it a huge problem although I do feel a little more clear-headed since going of it. One thing I think helped me was exercise. I always felt, while on tamoxifen and since finishing it also, that I feel more mentally focused, more sharp and alert after a good vigorous workout that gets the heart pumping. I usually run but I think a brisk walk does the trick too.
- For nausea I either take ginger tabs or have a couple of gingernut biscuits. It's not as bad any more but reflux is getting worse and i have to have antacid on hand at all times.
- am I the only one who continues to have nausea on this drug? I started taking it in March 2017 and on and off I continue with nausea. Today was one of my worst where I actually dry retched and needed to get to the toilet before I chucked up. I feel like I've had morning sickness for 11 months.
- I was in a terrible time with Tamoxifen. I started low dose cannabis oil and over time my brain and bone pains are noticeably better.
- Hi thanks, it is so comforting knowing I'm not the only one who's experiencing this side effect and I'll take on board your suggestions, I already carry around a note book but sometimes I think oh I'll have to write that down and forget, so a white board where I can see it is a good idea and I'll discuss it with my doctor just in case something else is goIng on.
