Help! Side effects on Tamoxifen

Hello ladies, I am new to the forums so not sure if i am doing this right. I was wondering if anyone can help or give me their experiences please. I have been taking Tamoxifen just over 2 months and was wondering if anyone has the same problem of waking up several times in the night. Is this normal?

Thank you

Hi there - that puts you about 3 weeks ahead of me, so far i haven’t been waking because of the tamoxifen (been waking with discomfort with expander implant )

I am having a few hot flushes but not any more than i had during chemo. I’m sure lots of ladies will be along to tell you their experience with tamoxifen but as i understand it wakefulness is pretty common on tamoxifen. I hope you get reassurance and a solution.

Lynn

x.

Hello, haven’t got a solution but since being on Tamoxifen, I wake up more often in the night, not so much from flushes but because I need the loo, I used to go once in the night but now I go twice most nights. My BCN says this is because chemo and Tamox have put me into the menopause and if it is a mega problem there is a tablet you can take, don’t want to take any more pills though.

Also, just think of the hormonal change that Tamox is wreaking and it is not surprising we wake up. I am not minimising your problem; I think so many of the side effects of the various hormone treatments are glossed over by the medics with the “well, it is stopping your cancer coming back so put up and shut up” approach.

Hope that you will feel more settled soon

I now sleep dreadfully since treatment and tamoxifen. Terrible hot flushes but night sweats far worse. I take clonidine for the flushes which helps a bit. I also take amitriptyline 10mg at night to help sleeping.

Julia xx

I too am suffering on Tamoxifin.
Can’t sleep properly, hot flushes and loo trips at least twice a night!
Also feel as though the weight is piling on, even though i am not eating any more and still taking the same amount of exercise!

All in all ,not happy with it and considering not taking it any more.

Julia, did you get the sleeping tablet from the doctor?
Just wondered as i am also having trouble sleeping since being on the tamoxofin.

xx

Low oestrogen causes these symptoms but sometimes they lessen over time.

Ann

Hi All

I have also been on tamoxifen for four months now and the hot flushes and night sweats and lack of sleep is really starting to get me down now.
I am also on clonidine for the hot flushes and amitriptyline 20mg as I have fibromyalgia which causes all over pain in my bones neither seem to be working at the moment.Had chemo and radio.Has anybody taken sleeping tablets and do they work as I am willing to give them a go just to get some decent sleep.

Wendy xx

Wendy - Have you looked into 5-HTP for fibromyalgia? I have read that it can help but you would have to decide whether it is right for you and consult your oncologist, obviously.

Ann x

I have just been given Tamoxifen by onco but with very little info! I am to start taking it in two weeks just before rads! I was hoping to start after rads? Is there any tips as what time to take in day or any supplments that may help with side effects. Hormones have never been great with me I am dreading this!

I think you need to check with your onc re the supplements. I take it at night, plenty of night sweats and hot flushes in the night, not been sleeping this badly since the kids were babies… Generally, they start you within four weeks of end of Chemo I was told.

Hi All,

Ann, thank you I will look at the information on 5 HTP.
I get flare ups with the FM due to stress levels and also lack of sleep, up until I was diagnosed with the BC in Oct 09 the Amitriptyline worked quite well for me. Lets just hope it lessens over time.I worry as I am due to go back to work in two weeks and have a demanding job.

Best Wishes all.

Wendy xx xx

Thank you everyone for your experiences on the dreaded Tamoxifen! I have been to see my GP and he has prescribed me Zopiclone. Took one a couple of days ago. Bliss! Actually slept the whole night without getting up to go to the toilet or having hot flushes.

ive been on tamox sence April this year. Wil ask my onc when i see him tues about the tablets.

have any of you tried the ladycare magnets?? they did help with the hot flushes/not getting up so much at night for the loo, but i cant keep wearing it as it makes my endometroisis worse.
eva

There are conflicting reports on the magnet, some say they work by messing with hormones and should be avoided by hormone pos cancers.

This is an extract from the NICE guidelines on treatment for menopausal symptoms in relation to tamoxifen:
• Soy (isoflavone), red clover, black cohosh, vitamin E and magnetic devices are not recommended for the treatment of menopausal symptoms in women with breast cancer.
I would be cautious in light of this and discuss this with the medics first!

I was just browsing and have learned something! I didn’t realise that my nocturnal visits to the loo since starting tamoxifen last year was poss. down to the tamoxifen itself! I thought the chemo had prob damaged my kidneys! So annoying isn’t it! But if the drug is doing it’s job and giving me a fighting chance of living longer - well its a small price to pay!

By the way - the horrendous night sweats expereienced at the start have reduced a lot over the months…