sleepless nights with tamoxifin

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1

hi all

Have been on tamox for 2 months now and im sure its effecting my sleep,used to sleep like a baby but since been diagnosed last oct have not had 1 good nights sleep.First i put it down to chemo but now im sure its the tamox.Iwake up 2 or 3 times a night,any advice anyone

Jackie xxxx

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I slept terribly for the first 2 months on Tamox - it was incredibly stressful.

I rejoined my (very spiritual) yoga class and and made sure I got plenty of fresh and exercise. I am now back sleeping through the night with no problems.

Good luck

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Hi Jacquie, (forgive spelling!)

I used to blame Tamoxifen for everything from Bankers bonuses to global warming! a DIAGNOSIS AND TREATMENT OF BREAST CANCER IS ENOUGH TO SEND EVERYONE OUT OF KILTER. Whoops… I didn’t mean that to be in capitals, but, on reflection, perhaps I’m right.

It will settle down and you will feel stronger… promise.

AlexG

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Thank you everyone,lets hope that within the next few weeks i start sleeping through because i love my bed and sleep.
Jackie xx

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Ive been on tamoxfin for 2 weeks ive been blaming chemo looks likes ive a long wait b4 my gud night sleep well not slept gud for last 8 months so whats a few more err

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im 7mths on tam now, and the sleeping has improved.
i still get up once sometimes twice but compared to vertually every hr it is bliss

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Been on Tamoxifen 10 weeks now and still waking up 2 or 3 times per night, but now getting back to sleep again most times. Like Jackie I love my bed and sleep so it’s frustrating and tiring but at least things are improving. I think in the early days and weeks of taking it once I woke up I couldn’t get back to sleep again for worrying about all the “what if” possibilities of the BC.
Sarah x

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been on tamox since april this year. Would it help to change the time that you take the tamox?? i used to take it at 9 in the night, but now i take it at 7pm instead. It helps a little bit. just a thought…
eva

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I take my Tamoxifen first thing in the morning, so it’s probably not the timing of it that’s causing it.

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Hi

I have been on Tamoxifen for over 3 years. I too suffer from sleeplessness. I was also wondering if anyone had circulation problems, inflamed toes and sore feet I wondered if it iwa made worse by the Tamoxifen or was it because I had Taxotere.

Carolyn x

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I’ve been on it for over a year and still get terrible leg and foot cramps that wake me up in the night. Also, sometimes my feet get really hot for no apparent reason!
I do sleep really badly; takes ages to drift off then waking up every few hours, but I don’t know if this is due to Tamoxifen or stress.

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Hi I have just changed onto femara after finishing my five years on tomoxifen pleased to say after four weeks nothing seems any worse than when I was taking the tomoxifen other than for the hot flushes. I don’t know how long it takes for the joint pains to start up on femara or if the flushes lessen over time but on tomoxifen I had the hot flushes for the full five years.But I am hoping reading the following may help some of those sufferring with cramps and night sweats on tomoxifen as I too had both I found by changing from ordinary tea to non caffeine tea the sweats at night seemed to decrease but the continue waking continued. But as for the cramps someone told me to try bananas at the time it appeared silly to think a banana a day would help but I have eaten one every morning for the past four years and found my cramps stopped after a few weeks needless to say it is worth anyone sufferring with cramps to give bananas ago.

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I have been taking Tamoxifen since March and apart from getting a bit warm sometimes and not sleeping very well, they were my only side effects. About a month ago though (so after 6 months), my sleeping (or rather NOT sleeping) got much worse, I felt nauseous constantly and with a sicky headache which refused to budge, regardless of what painkiller I took. My brain was racing too with thoughts firing all over the place. It was really scary to be honest and I wondered if I was having a nervous breakdown! The locum doctor I have seen thinks it may be the cumulative effect of the Tamoxifen and my body isn’t tolerating it. I haven’t been able to see my own doctor yet but I have stopped taking the Tamoxifen because I just couldn’t bear to feel so awful. Within two days I felt much better. A week later I took half a tablet and within hours the nausea and headache were back, both of which lasted two days. Needless to say I’ve stopped the tablets again, but obviously I am worried. I know I need to see the doctor, but this is a very busy time for me at work (I have a stressful, full time job as well).
Has anyone else suffered like this and if so - what was the solution? To be honest I don’t want to have to take anti depressants, sleeping tablets and anti sickness pills to counteract the Tamoxifen.
I’d be grateful to know if anyone else has had these SEs.
Thanks
Val

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Hi Val,

sorry to hear ur having such strong side effects. I was on tamoxifen for 6 months, onc changed me to aromasin 3 months ago, and the nasty side effects have cleared up, still have hot sweats but they dont wake me, I am post meno so dont know if you are in the same boat

hope u get sorted, its so miserable isnt it x

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Thanks truffle shuffle. Unfortunately I’m not quite sure where I am menopause wise. I’m 51 so imagine I’m in the middle. Did you have similar strong side effects on Tamoxifen?
Glad to hear that your new medication suits you better. I can imagine the relief. You are right - it is miserable and you don’t know what to do for the best.
Val x

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Hi,

my side effects were mainly, lots of hot sweats and sleepless nights, i still have the sweats but not as many and not as fierce , and best of all I am now sleeping right through, just like a baby, and thats worth its weight in gold. loss of sleep is underestimated, its so insipid, and plays with the mind.

hope you find your SE’s reduce soon

take care x

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waking up every two hours most nights with hot flushes. I feel a prickly heat and have to get up to cool down. My oncologist won’t let me take anything else apart from Evening Primrose which makes no difference whatsoever. I am quite tired most days and have to drag myself through the working day…Oh for a full nights unbroken sleep… that would be bliss…

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Hi all

Here’s the BCC publication ‘Menopausal symptoms and breast cancer’ which you may find helpful :

breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/17/

Best wishes
Lucy

20

Hi

I have been on Tamoxifen for about two months and suffered really badly from night sweats. Wake up suddenly with tingling feeling in head and then get really sweaty which makes my night clothes wet and needs changing. Have a direct line from bedroom to bathroom to airing cupboard to dry them for next time. This was happening 3 or 4 times a night , the record was 6 when I even needed to change into hubbies PJs as I had run out of my own!

However last week someone at work who is in menopause suggested trying a “chillow pillow” so I ordered one on line, cost £30 inc p&p. (I got mine by googling the site but also available cheaper on Amazon)

It arrived on Friday and it really works! It is a pillow that you activate by filling with water once and then it is like a gel inside. This is cool/cold when you go to bed and does help. Now when I wake up I turn over and find another bit of pillow that is cooler and go straight back to sleep. It takes heat from the body and does eventually get warm but then when left during the day it goes cold again. So fo the last 4 nights I feel like I am getting some decent nights sleep again

Hope this helps - best wishes to all

carol