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.

Hi @Cheryl_C,I posted about this very thing a little while ago. I was that worried about it I have had two brain MRI's to make sure my brain is functioning. Just waiting on the results of the second one. Unfortunately, the response that I have had from the onc is that's it's not a normal side effect. All you have to do is a quick google to find out that it is a lot more common than they think. There are studies being done overseas on it.Not one of the side effects you get told about and it majorly impacts your life. Mine was that bad that I set an alarm to remind me that it was my daughters birthday the next day. I was so scared I was going to wake up and have forgotten. i will put an update on my last post as I have been able to alleviate some of it. I'll tag you in it.

Hi again @ Cheryl_C. The aim of Tamoxifen/ Aromatase inhibitors eg Letrozole is to eliminate oestrogen .I had the symptoms you describe when I went thru the menopause and my oestrogen levels fell dramatically and it was very scarey. You will adapt and get thru this phase as so many have before. I find my phone’s diary , a notebook and the text reminder service many of the medical community provide a big help.My mum had Alzheimer’s so I know a bit about how you feel. You may have to wait a bit for family to stop seeing you as a superwoman and accept they too have to remember stuff. If you can accept it’s normal and you are normal a sense of humour about it can help all concerned.PS My husband even put a whiteboard up for me of the kids comings and goings - not always up to date mind.

Hi @Emma I had no side effects after giving up Tamoxifen after a short time. My quality of life improved. Couldn’t go back.

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 @Cheryl_C, My name is Rosie and I am one of the Cancer Helpline nurses working at BCNA. We also moderate the online network. I am sorry to hear about the side effects you have experienced with the hormone therapy and understand you must feel particularly anxious about the confusion and memory loss especially with your mother having dementia. I will send you a private message now. Rosie

Tamoxifen side effects | BCNA Online Network

13 Replies

Romla
Member
8 years ago
Hi again @ Cheryl_C. The aim of Tamoxifen/ Aromatase inhibitors eg Letrozole is to eliminate oestrogen .I had the symptoms you describe when I went thru the menopause and my oestrogen levels fell dramatically and it was very scarey. You will adapt and get thru this phase as so many have before. I find my phone’s diary , a notebook and the text reminder service many of the medical community provide a big help.My mum had Alzheimer’s so I know a bit about how you feel. You may have to wait a bit for family to stop seeing you as a superwoman and accept they too have to remember stuff. If you can accept it’s normal and you are normal a sense of humour about it can help all concerned.PS My husband even put a whiteboard up for me of the kids comings and goings - not always up to date mind.
kezmusc
Member
8 years ago
Hi @Cheryl_C,

I posted about this very thing a little while ago. I was that worried about it I have had two brain MRI's to make sure my brain is functioning. Just waiting on the results of the second one. Unfortunately, the response that I have had from the onc is that's it's not a normal side effect. All you have to do is a quick google to find out that it is a lot more common than they think. There are studies being done overseas on it.
Not one of the side effects you get told about and it majorly impacts your life. Mine was that bad that I set an alarm to remind me that it was my daughters birthday the next day. I was so scared I was going to wake up and have forgotten. i will put an update on my last post as I have been able to alleviate some of it. I'll tag you in it.
Rosie_BCNA
Member
8 years ago
Hi @Cheryl_C, My name is Rosie and I am one of the Cancer Helpline nurses working at BCNA. We also moderate the online network. I am sorry to hear about the side effects you have experienced with the hormone therapy and understand you must feel particularly anxious about the confusion and memory loss especially with your mother having dementia. I will send you a private message now.
Rosie

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Tamoxifen side effects

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