Evening, I was wondering if I could hear peoples experiences of taking Tamoxifen. Im due to start taking it tomorrow and I wondered if anyone can tell me If there's a good time to take it. Should I take it with food? Does it have to be taken at the same time every day?
My consultant just said take one tablet a day and I didn't ask any questions as I was more interested in information regarding radiotherapy
Ive done a little bit of research but all I've read about is blood clots, weight gain, hot flushes.
Thank you
Hi Magtie, I’m on Anastrozole which has a different set of possible side effects but same intended direct effect ie wiping out my oestrogen!
I dithered about when to take them and people here have different views but medically I think the only important thing is around the same time each day.
I take mine first thing in the morning with a glass of water. My reasons are: I’ll remember, possibly the most important thing for me!; I’d probably rather have any side effects during the day when I’ve lots of distractions rather than disrupted sleep. Having said that, I’m sure the drug has a long half life so it may not make any difference at all in that respect. I started off taking it with food as I thought it would be less likely to cause nausea or other digestive stuff but now take it on an empty stomach and have not had any issues of that sort. The instructions say it doesn’t matter re food. I think I was over thinking it at the start, now I just pop the pills and worry most about remembering to take them so they’re by my bed and it’s the first thing I do!
Good luck with it, I remember putting off taking them for a day as I wanted one last day drug free! I do have some side effects but I definitely think it’s worth it to keep the beast at bay. HFxx
Thank you HappyFeet. Im also confused as some say don't take it before radiotherapy which is due to start at the end of January. The more I read the more confused I get.
Hi Magtie
I am the same - I take my Tamoxifen in the morning because I know I'll forget. To be honest, I have the side effects all the time so I'm not sure that for me, changing the time would make any difference. I know some people find it better to take them at night though so I guess it's different for everyone. The list of side effects is quite frightening isn't it? I mainly get hot flushes, but then I would have had them at some point anyway so I don't think I'm doing too badly. I did have a blood clot scare in 2019 - I had been on a long flight and a few days later I had an extreme pain in my calf - it woke me up - my leg swelled up and the pain went on all day - I finally went to A+E and the doctor told me he was sure it was a blood clot and gave me blood thinners to inject over the weekend until I could get a scan on the Monday. Turned out it was a really bad cramp. The point of telling you is that I said to the doctor I was on Tamoxifen and it increased my risk. He went away and looked it up and then told me that it did indeed double my risk - but that my risk was only 1% so it only made it a 2% risk. He thought it was quite funny - as he said, it sounds terrible but when you look at the individual it might not be so scary. Fair enough, if my risk had been 20% then doubling it would have been scary, but it did make me less worried about long flights.
As for radiotherapy - there is something about that and I can't remember what it is. My consultant gave me a long lesson on it - with drawings - but it was 4 years ago and I've forgotten. I see you've put another post out for that so maybe you'll get an answer there, but if not you could try in our Ask a Nurse section or ring your clinic and ask them about it. I know my consultant had worked a lot in Australia and it was more common practice there.
R
Thank you ronstar for all the info. The list of side effects is horrendous and I think in my head Im going to have them all! But I realise how important these tablets are. I had thought about long haul flights but the percentage you've mentioned makes me feel happier about travelling. I guess I'll just have to see how I go and take each day as it comes..which is something I'm learning to do now anyway.
Hi Magtie,
I started mine last Monday and after my course of radiotherapy as advised by the oncologist. The advice was to start one week later but since I felt quite fatigued and generally affected I delayed starting by a couple of weeks. I take it in the morning with water alongside my breakfast and will aim to stick to this routine. I was really nervous about beginning it due to the emphasis on all the serious side affects, fingers crossed it’s so far been flushes at night, but I was experiencing these periodically beforehand it’s difficult to say if they’ve been exacerbated yet.
I do feel extremely emotional at times, but there’s so much going on at the moment what with the pandemic and feeling physically compromised, it’s difficult to know if the lack of oestrogen is contributing?
Let me know what you decide to do!
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