I was dx in June last year, had lumpectomy, WLE, 3 FEC, 3 Tax and 15 rads. which finished in early Feb. Now on Arimidex for 5 years- which has exacerbated my existing arthritis and together with hot flushes means my sleep is very disturbed.
I don’t have insomnia - just frequent waking from pain in my shoulders or hot flushes. On a good night I may only wake 3 times; on a bad night, nearly every hour.
Have tried various combinations of prescribed drugs (diflafenic, paracetamol, co-odamaol,amytriptaline) as well as long-term glucosamine, codliver oil & Vit D but none seem to make a lot of difference. Would so love to have a good night’s sleep; just once a week would be wonderful! Has anyone any suggestions?
(on the good side, after years of struggling with my weight, I lost a stone thro chemo and have been steadily losing a couple of pounds a month since the New Year- so it’s not all doom and gloom!)
Hi, I’m also getting horrendous hot flushes from being on chemo - waking me about three times a night on average and it’s driving me mad!!
I take herbal sleeping tablets every night and if I have any pain from my bone mets (which isn’t every night by any means) then I take a couple of cocodamol but still find myself waking at least once in the night.
Wish I could echo your weight loss - I’ve put on about five pounds so far (halfway through) although have heard the average is around 30 lbs gain so can’t moan really!
Perhaps someone can suggest something for the sleepless nights …
Lesley xx
im like that, think its arimidex, I wake up with neck is dripping wet!!! and wake up a lot, listen to relaxation tapes which helps a little xx
I put on some relaxation music at bedtime, just very low in the background and I light some incense, usually vanilla or violet, but I’ve also found one called “Peace of Mind” that is very good. I generally float off within 15 mins of the CD going on. My OH finds this a good way of drifting off as well, his mind is often whirring as we run a web design business from home and he is sometimes preoccupied with ongoing projects.
Try looking at talkaboutsleep.com or Google somewhere like the London or Edinburgh Sleep Centres. They have loads of good tips on achieving better sleep.
Don’t have ANY problem sleeping -or getting to sleep; it’s being woken up by pain and flushes so frequently that’s the prob!
Some ladies I’ve met have sworn by those pillows called Chillos (sp?) for keeping cool during the night. I think you are supposed to refrigerate them to chill them down and have heard you can buy them from some of the shopping channels like Ideal World. I’m post menopausal and the chemo gave me an immediate menopause with no hot flushes or night sweats. However, I do now get the occasional flush and keep a small battery operated fan in the bedside cabinet drawer, plus a can of spray water mist for my face.
I use a chillow, and find it very helpful. You don’t need to refrigerate it - mine just stays on my bed. I have the mini version which I leave under the edge of my pillow, then pull out and place under my head when necessary.
Julie
x
I’ve found the chillow pillow to be invaluable particularly since starting Tamoxifen. Just google to buy online. They’re easy to set up - fill with water, roll and get rid of air bubbles and no further care needed. I have mine ready for use and when I have bad nights with flushing I use the chillow.
I also have a tower type fan with remote control by the bed … wonderful. It wasn’t expensive - bought from B & Q and does a fantastic job.
Whilst I still wake up, I wake up far less and am far more able to manage the hot flushes.
I hope you find a way of sleeping better Topsymo.
Gill
topsymo I sympathise with the poor sleeping, I am the same. I am lucky in that I am not on hormone tablets so haven’t so far suffered from night sweats - although I suppose this will come at some point in the future - but I do have great pain in my arms and shoulders, and it is especially worse at night.
I go off to sleep ok, but wake up most nights several times and just can’t get comfortable and then end up having to keep getting up to go to the loo.
Now and again I do sleep for a few hours but can count on one hand how many nights that is.
If you find out an answer, please let me know.
Yes it is a bummer! I have used a chillow- but after some months it seemed to go permanently hard and ‘ridged’ and I’m afraid I gave up on it. That’s my problem these days- just no staying power!
Thanks for helpful comments folks ( & will certainly let you know if I find something that works Peacock.)
I know Arimidex is causing most of my problem & someone suggested taking it at night so I’m trialing that at the moment. I actually get the most relief for my painful shoulders from my husband massaging them but he’s seems strangely reluctant to wake up and do that for me 3 or 4 times a night. Men are so selfish aren’t they?
I empathise entirely, Topsmo. Having no sleep is the pits. I wake witrh hot flushes, pain in my hips (waiting MRI results to see if spread) and crippling agony of cramps in my legs and feet, sometimes it can be from my bum to the ends of my toes. Not sleeping well is torture. When I have a better night, my 3 year old seems to have a bad night, so feel I can’t win.
Onc says to carry on with the Tamoxifen tho so I shall ; if it’s only for 5 years that I can’t sleep well and it means I get to see my girls grow up, I’ll gladly do it!
Really hope you get some relief soon
Kinden
x
I have terrible problems sleeping after breast cancer diagnosis and treaqtment. I also got cramp as well but since being told a glass of Tonic Water mwith quinine helps my cramps have almost stopped anyone suffering should give it a try.
I wake up regularly through the night with sweats and/or cramp. I was pointed in the direction of help by a fellow sufferer. She told me to get a ‘hydracool’ headband. It is a band of material containing gel crystals and you soak the whole band in water for 3 minutes. The crystals then turn into a gel that stays cool. You only need to resoak about every 7-10 days. If you tie the band like a neckerchief round your neck it really helps with the flushes.
The band is ‘Technical Headgear’ by White Rock and is called Active Hydracool - used by people in jungle areas etc! Good outdoor stores may stock it (although I’ve only found one store so far), but I’m sure it will be available over the internet.
Jo