Hi this forum is a wealth of information and I’m so grateful it exists.
But I’m getting really nervous restarting Tamoxifen as I read more and more about side effects even though it’s meant to be much less than Letrozole. I finished radiotherapy last week and will start tamoxifen next week
The sensible side of me says most women are fine on it but I’m really (usually) active and havent had any major perimenpoausal side effects (pre breast cancer)
so I’m asking the forum - does anyone have any tips please on how to reduce the potential side effects of tamoxifen?
eg 1. is it better to take in the morning or evening? Does taking it the morning reduce the waking up early am?
2. how do you deal with menopause side effects - hot flushes etc
3. What’s best to reduce joint pains etc ?
and is it correct, it generally only adds 0.5% reduction in the reoccurrence rate?
So Again any tips gratefully received I’m very nervous about this part of treatment esp because this part goes on for 5+ years!
I think we’ve all had that worry about Tamoxifen as there are, unfortunately, people who struggle with it. None of us want to feel lousy after going through cancer treatment and wanting to get on with our lives. When I collected my first prescription I took it there and then because then I couldn’t think about it any more - what’s done is done!
After taking Tamoxifen for a couple of weeks I struggled to concentrate for a few days so changed the time I take it from lunchtime to 5pm and since then had no problems (it was likely just getting accustomed to the medication). It’s been a few months now, and other than being slightly warmer some nights (nothing lighter pyjamas can’t solve), I haven’t experienced any negative side effects. No hot flushes or joint/muscle pain. Changing brands is another thing which people can worry about so want to add I’m on my third and it’s made no difference for me.
I’ve read cutting down/out triggers such as alcohol and caffeine can help reduce any side effects and exercise comes up again and again as being beneficial. I don’t drink and gym/run most days so I like to think this is why I’m doing fine and it also gives me a sense of being in charge. Equally, it may simply be down to luck.
I’m not a medical professional so can’t comment with any authority, but Tamoxifen does reduce risk (some research states by 30-40% in premenopausal women), so I guess the absolute benefit will depend on a person’s actual risk. For me, even if it was only 0.5% I’d still take it without a doubt.
I have minimal side effects taking mine, I set an alarm for 6pm everyday so I don’t forget to take it, that seems a good time for me. I have also found a brand I like/suits me and have it on my NHS app to dispense that one if available and there have only been a few times it hasn’t. Try not to worry about what hasn’t and might not even happen, you might be one of the lucky ones who doesn’t feel any side effects and if you do, it can be tweaked to resolve any issues.
The brand you take helps. I took Arcana as my oncologist said her patients reported minimal side effects. I had no side effects (bar slight thinning of hair) and I took it in the evening. Exercise will always help minimise side effects as well as recurrence.
thank you that’s helpful - I dont have a specified brand prescribed unfortunately but will keep it in mind if need to swap for any reason
I’m planning to try and continue all my exercise. I’m not going to let it stop me - fingers crossed. thank you
Thank you this are really helpful tips - it’s so good to know it can be ok
the consensus from this thread here seems to be take it early evening? - so that;'s useful to know
I just wanted to check if anyone had early morning wakening from this? presume it’s more likely if you take it at night maybe?
thank you very much amd best of luck with it all
xx
Hi, I’ve been on tamoxifen & zoladex injections for a year now and my side effects keeping getting worse & don’t seem to settle. Every few weeks it’s something new. I can put up with the weight gain (I’ve gone up 2 dress sizes & now overweight), but I’ve had heart palpitations that seem to ramp up every few months. It’s scares me when I exercise & had and episode where I nearly passed out. I had it checked out with my medical team & apparently my heart is fine. But I go days at a time with increased palpitations, literally all day even at rest my heart beat is so forceful. My skin has become incredibly sensitive. I get covered it hives when I get too hot during exercise and on sunny day my skin gets very red and can blister, taking weeks to heal.even if I’m not in the sun, the heat is enough to cause a reaction. I had eczema all my life but this is something else. The hot flushes are increasing in frequency and intensity. My joint pain is bearable but overall I’m finding it very hard to manage all my side effects on day to day basis and I’m really questioning if I can carry on with taking the medication. I can’t seem to move forward to live my life when every day feels like a battle. I hate complaining but I don’t know if it’s just me & my body can’t handle the treatment? Has anyone else had a similar experience? I really want to stay on treatment if possible, but I can’t manage side effects when they are constantly changing and work. Any advice? Thanks.
I found after a few months I started getting intense itchy rashes on my body and palms and feet. My breast cancer surgeon dismissed it completely as being Tamoxifen related, but my oncologist later confirmed it can cause that reaction. I now take a daily antihistamine , which has cleared it right up.
Might be worth trying with your hives?
Thanks Caron. It’s good to know your oncologist confirmed Tamoxifen can cause this reaction.
I’ve seen my GP and they advised taking antihistamines twice a day at the moment and using topical steroid cream for my skin. It’s not helping. I’m waiting for an appointment with my oncologist and dermatologist to advise further.
