I’m just letting off a bit of steam! 6months of Tamoxifen and I am absolutely shattered! I am waking every couple of hours throughout the night, and that’s a good night! On one brand of Tamoxifen I was awake every 45minutes. I’m lucky in the fact I have always been able to cope with minimal sleep. BUT this lack of decent sleep, is really taking it’s toll.
I’m getting headaches, which I’ve never suffered with before. I get up in the morning feeling as tired as I was when I went to bed. I’m now struggling to get through my working day. Which is frustrating, as I managed to work through Chemo and Rads. Everyone around me seems to think I am through the hard bit!! But clearly I’m not. I feel worse now than I have since diagnosis.
It’s weird just after I was diagnosed, there was a report on ladies giving up Tamoxifen before the 5 years, because of the side effects. I remember saying to my mum how silly that was, and why would anyone risk their cancer coming back!? BUT I can now see why some women take the risk!
I am so tired and so fed up I’m not enjoying life things that I used to love doing, I now dread. Simple things like shopping aren’t fun anymore, because I know that I only have 45mins before a hot flush hits! Then I’m dripping with sweat, which is so embarrassing and uncomfortable. So after a couple of hot flushes I just give up and go home.
I feel really bad moaning about these things, I know I should be grateful that this drug is available and that it will hopefully stop the cancer coming back! But the thought of no proper sleep and constant hot flushes for the next 4.5years of worse still 9.5years is just terrifying.
I’m seeing my Oncologist in a weeks time and hoping they can suggest something to help! I’d give anything for a few good nights sleep. I think some decent sleep would help me see things more clearly. Right now I am seriously questioning how much longer I can cope with this.
Sorry you’re having such a tough time, ironical as you got through all the tough treatment s.
Have you tried the usual things that can effect the flushes? Change brand, change the time of day you take it, avoid spicy foods, caffeine, alcohol.
For work I have a big electric fan on my desk which I switch on as soon as I feel the beginnings of a flush. The rest of the time I carry one of those old fashioned Spanish type fans.
I believe you can also be prescribe d law dose of an anti depressant which can help too.
I have been on Anastrozole since January and was finding my sleep was as disturbed as yours. I was given some Lavender Body Creme and tried this one night quite by chance and I had a better nights sleep. I carried on using the cream for a couple of weeks. My sleep pattern has now returned to normal for most nights.
This may just be coincidental, but Lavender does help you to relax,.
I’m the someone Mary referred to in her reply This is what I posted last week. I hope it helps.
I am 46 and I’ve been having hot flushes for as long as I can remember - ever since I was in my early thrities, if my memory serves me right. I would wake up in the middle of the night drenched in sweat when my husband would actually be complaining the room was too cold!
I’ve tried everything from putting the A/C on the lowest temprature possible to sleeping in my undies. Nothing worked. The only thing that has really worked is excercise. I discovered that if I break into a good sweat early in the day, the dreaded hot flushes do not make their midnight visit and I have a peaceful night. Also not eating anything at all at least two hours before going to bed at night keeps hot flushes at bay. Keeping a well hyderated system helps a lot too.
I don’t have a clue why these tricks work and no one seems to know either. I would guess they regulate core body temprature.
When I was prescribed Tamoxifen for my BC I thought that would be the end of me! If I already have hot flushes, what would life be like with Tam! My hot flushes have not worsened since I’ve started taking it provided of course that I exercise in the morning, do not eat at least two hours before turning in and drink plenty of water - up to three litres a day.
I really do sympathise because I have also been sleep deprived since starting Tamoxifen. I tend to get 1-2 hours of sleep then wake up. I can usually get beck to sleep but sometimes it takes a while. Some nights I fall asleep quite promptly but then wake up after 20 to 30 mins. Alcohol sometimes helps-but obviously that isn’t a great solution. I am currently on a 6 weeks break- I feel less dizzy and tired and think I’m sleeping a wee bit better but last night I was awake at 3 a.m and struggled to get back to sleep. The sleep deprivation is causing all sorts of daytime problems.
My hot flushes are annoying but not as bad as some people experience. I just wear cool clothes and strip off as soon as I feel hot. Chiffon type fabrics are a nightmare.
I bought Nytol and have taken them once or twice-think they may have helped a little-maybe a placebo effect.
If you get any suggestions from onc please let us all know. Good luck.
I thonk u may of just given me some insight to why I keep waking up at silly o’clock all through the night lol
Never dawned on me it b the tamoxifen… I only been on them a month and every night for about 2 weeks ime awake every couple of hours… thought it was just me working my mind over time and not being able to sleep x
Yep hun ime realising this… not as clear cut as folks like to think is it. Some people think you should b done and dusted now the ops etc are done… If only … keep smiling hun… its gets us through xx
Hi Linda
İ am suffering exactly the same as you. İ also had fec and started with the flushes and ached n pains toward the end of fec and continued afterwards. Then i started on tamoxifen after my op (fec before op) and it has got worse if anything. İ start rads on 25 sept but have already been on tamoxifen for 4 weeks. İ havent mentioned the pains to onc but did re the hot sweats and he thinks it is because the fec put a stop to periods half way thru. İ am 48. Let me know if u have any tips! İ have a chillow but that only helps so much. X
Hi, İ think some oncs leave it until after rads. İ asked what he recommended and he said to start straight away so may def be worth asking the question though. İ had def started with the flushes and aching joints before tamoxifen though which İ think could be orstrogen depletion as a result of the chemo damaging the ovaries. İ even have one of those magnets but am worried to use it in case it starts the overies off again as like you İ am oestrogen receptive. Do people think the magnets are good? Might give it a go overnight to see if it helps sleep! X
Just to let you know the clonidine has reduced the amount of flushes I have through the night, I’m down to one or two but when they do come they are ‘stronger’. At least I get a little more sleep in between each one.The aches are still as bad at night thou, lower back and legs…can’t seem to win ! Don’t get flushes in the day now…hope it remains the same when I start tamoxifen xx Linda
Hi Nanny Sal, I’ve just returned from my 1st radio session and have been given my tamoxifen…wockhardt brand so hope this will be ok. Glad you have your flushes more under control…enjoy your well earned rest …Linda xx
Thanks wax2014, that’s interesting to know. I might see about the Clonidine as I am already on amitryptilene for what they are treating as nerve pain from the wle sp perhaps clonidine wld be better instead as it cld treat that and the hot flushes together! Thanks for the info.
I’m sure tamoxifen has contributed to my sleep problems BUT last night I switched off the wifi in my bedroom and slept till 6am.
This is entirely unscientific but I had noticed I felt much better away from home and worse when I returned.
I will continue with the experiment and report back!
Hi Nany Sal,
Just read your posting on the 7-9-14. I really feel for you, I know how hard it is with this sleep deprivation, I am actually struggling at the moment, finding it hard to sleep with all these hot flushes. I was on tamoxifen which was almost bearable but recently discovered that I have sticky blood and ended up very small blood clots on my lungs, so I have been switched to Anastrozole which is awful, my joints are so painful, and I am now on warfarin to thin the blood, not thats a problem, But I actually wish I could go back on the tamoxifen I was on, it was better than this. I was diagnosed 18 months ago and every 6 months my doctor lets me have sleeping tablets for 1 month, just to help me catch up with some sleep, not saying it is brilliant, but once I got to sleep, I would probably go for 4 hours before I woke again. Just try every thing possible to help yourself get through this. I am glad I read all these treads tonight, I am going to try some of the suggestions. Take care Jane
Thanks for replies ladies! I know I’m being ridiculously ahead! Trying to be pre-armed I guess! I’ve got 3 months worth at the moment (only because I forgot the onc prescription could only be exchanged at hosp pharmacy) and happened to be at GP so she gave me one instead!
things that I used to love doing, I now dread. Simple things like shopping aren’t fun anymore, because I know that I only have 45mins before a hot flush hits! Then I’m dripping with sweat, which is so embarrassing and uncomfortable. So after a couple of hot flushes I just give up and go home.
This is what I posted last week. I hope it helps.