Hi all,
I am after some helpful tips if poss. Since starting Tamoxifen and Zoladex a few months ago I have suffered terribly at night with the dreaded hot flushes (I’m 35 and pre-meno by the way). I didn’t really have any problems to begin with, but as time has gone on the hot flushes have got progressively worse. They usually start at around midnight, and then continue on and off throughout the night. During the day I don’t seem to have any problems at all. Oh how I long for a decent nights sleep, but it just never happens!!
So, I was wondering if anyone had a tips for dealing with hot flushes at night. I have considered gettin a ‘chillow pillow’, are they effective? Also, I’ve noticed on another thread that something called ‘Clonidine’ has been mentioned as a possible remedy for hot flushes. If anyone knows any more about this I’d be grateful to hear from you.
Many thanks in advance,
Kelly
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Mine have not been too bad … nothing that a good waft up and down of the quilt hasn’t sorted. I was told Evening Primrose Oil was effective as is Sage. Haven’t used either of them myself so can’t personally recommend.
Hi Kelly
I feel for you. They are just so horrible. I too have them and more so at night. I can almost time them. Every 1 1/2 hrs. Also have Zoledex and on Tamoxifen for the last few months and in desperate need of a nights sleep. Longest sleep had was when had my mastectomy with the aneasthetic!!
I purchased a chillo pillow and it is wonderful. I keep it either under my pillow or as side of me and move top pillow when flush comes on. It does stay cool for quite a while and no need to put in the fridge etc as it cools down on it’s own. It is quite cold but not uncomfortable, I would definately recommend one. Unfortunately, I still wake up but it does make a difference, it feels great.
I also have been given some ‘anti’depressants’ ‘venlaflaxin’ which are supposed to help. I have not long started taking this and not sure if it take a while to get into the system to work (I hope so). It does seem to have made the flushes slightly less (not dripping just damp!).
As above, I was also told Evening Primrose oil. There are some other things but I think you have to be carefull if you are ER+.
I hope this helps and will be interested to see what else others say.
Take care
Love
JulieL
x
Hi Kelly
I’ve been on tamoxifen for a couple of weeks now. I had hot flushes with chemo and so going on Tamoxifen hasn’t made a huge amount of difference. I did speak to a lady who had been on it for 5 years and said that she took her’s in the evening because she would rather have hot flushes during the night than during the day when she worked. Does anyone have any thoughts on this, does it make a difference when during the day you take it? She seemed to suggest that some women found it better to take it in two separate doses to even out the symptons. It might be worth asking your docs or BCN.
take care Pauline
Hi
I have been on tamoxifen since November but the taxotere made me permenantly hot any way so having previously been constantly cold I am now constantly hot, it’s great for the heating bills but my family all wear coats now! I hate the night sweats so I think I might invest in a chillo pillow, anything is worth a try.
One question, are you all still in contact with your BCN’s cos I haven’t heard a word from mine since I was referred to oncology in July last year following my post surgery results
Alison
Hi Kelly,
Have you tried Nytol? Not the herbal variety, the real stuff that they keep behind the counter. You can’t use it too often as it loses its effect, but I am now taking one once a fortnight. Not sure if once a week would be too much, and I don’t want to be in the position of it not working. Maybe someone else knows more here.
But once a fortnight I get a good night’s sleep. I still wake up with the flushes, but I am much more sleepy and go back to sleep much quicker.
When I next see my onc (I see him every three herceptins) I am going to ask whether these flushes should subside with time. At the moment (6 months into tamoxifen) they are getting worse, which is really getting me down. I’m reluctant to take clonidine as I feel I rattle anyway.
I would recommend a chillow - I sleep on mine all the time, and turn it around to find a new cool patch as necessary. It is bliss when you wake up hot.
Hi Roadrunner,
Who is your onc? Mine is Dr Khanna, and quite frankly I get scared to ask him anything these days - depends what mood he is in when I get there !
I’m a bit behind you, as I’ve only had 2 herceptins so far.
Someone recommended that I use Starflower oil capsules for the flushes, so I checked with my doctor if it was okay to take them (she has had bc, so understands my worries) and she said it was. Anyway, I’ve been on them for about 2 months now and they are much better than they were. I still get them, but not as many and nowhere near as intense as they were.
My biggest worry at the moment is my hair! It seemed to get off to a good start and now seems to have stopped. I am desperate to be able to ditch the wig!!!
Karen
Hi Karen,
Yes I’m Dr Khanna too! He’s OK if he’s talking about something he wants to talk about, but is extremely slippery when he doesn’t want to know.
I’ve been taking evening primrose oil. Do you think that starflower oil is better?
I didtched my scarves 3 1/2 months after my last chemo, although my hair was still very short. Being winter I wore hats out & about but nothing at work & home.
I will have herceptin no 8 tomorrow. Can’t believe I am nearly half way through.
I don’t know if it is better or not as I went straight on to Starflower oil, but might be worth a try.I have noticed that some days are worse than others, so am tempted to keep a diary to see if there is a pattern. I’m wondering if they are worse when it would have been the time of my period.
I see Dr.Khanna on Friday and have no 3 next Wednesday,it still seems a long road so am glad to hear you say that you can’t believe you are half way.
I finished chemo on Jan 11th and don’t wear anything at home -I even popped round to a neighbour like it yesterday, but not ready to be seen in public yet though!
There is a lady who I used to talk to at chemo, who is 6 weeks ahead of me and her hair is growing great guns,I wonder what her secret is!
Karen
Hi all,
thank you so much for all your responses, and particularly the top-tips! Plenty for me to try I reckon so maybe no need to suffer much longer! Off to see my surgeon tomorrow for a check up and I’ve no doubt I’ll see my bc nurse there so I may run a couple of things past her to see if she thinks it’ll be suitable. Think I’ll defo be investing in one of those chillow pillow’s though,
Take care and thanks again, much appreciated,
Kelly
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Hi Kelly
My GP prescribed clonidine when I mentioned about the lack of sleep due to hot flushes. It can cause drowsiness so I make sure the final dose is just before bedtime. The hot flushes are now bearable during the night and I don’t get any during the day. My GP did warn me though that they don’t work for everyone. I started taking Tamoxifen end of Feb. Oh another thing helps. My husband has just started working nights which means I get the whole bed to myself so I have been sleeping better!!!
Take care
Angela
DKAF50 I believe it was me that recommended Starflower Oil Capsules to you.
They have helped enormously with the hot flushes I had… unfortunately, I believe Armidex must work in cycles… no hot night flushes resulted in aches and pains, now I am back getting hot flushes through the night and no aches and pains. There seems to be no happy medium with taking these horrid tablets.
Hi to all with hot flushes,
I’m telling everyone about the Ladycare magnet which I now wear every day. My night sweats have reduced considerably and I have even had one night when I slept right through. I don’t know how it works or if I just believe it does, but I’ve certainly been more comfortable after starting to wear it. I bought mine in the local Waitrose but they are going to be available in Boots, too or you can buy online.
All the best,
Maddy x
Hi Maddy,
Thanks very much for that, I’m gonna google ladycare magnet now,
Take care,
Kelly
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The Telegraph carried a piece regarding hot flushes, particularly those brought on by Tamoxifen ( Jeez, I think it did, my memory!!) Well, hot flushes anyway, there is now sound evidence that acupuncture works at reducing them. Might be worth a little research? Hope they lessen soon, they are just awful!
Sara.
x
My homeopath gave me a remedy to help my liver function and the hot flushes stopped. That, alone, was worth the fee!
The chillow is great - I use mine thoygh my partner complains if he touches it by accident as he is a bit nesh!
I also keep one of theose little handheld fans my the bed and in my handbag as they are rgeat for a quick whisk of cool air.
One advantage of losing my hair was whipping my wig off as soon as the flush started!
Thanks flyright, I keep saying I’m gonna get one of those handheld fans and I still haven’t got round to it! Your message has defo prompted me to finally get one!
Kelly
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I had an operation last week on my shoulder and had to stop the Starflower Oil Capsules for 2 weeks before the op… within 2 days the hot flushes came in at nearly one every hour. I have been back on the Starflower OC now for 8 days and thank goodness, the flushes have diminished back to what I was having before… about 5 or 6 every 24 hours.
Hi There,
have recently started taking Red clover and Evening primrose and I am getting less hot flushes. I think It may be the Evening primrose as I ran out a couple of days ago and started flushing more.
Evening Primrose is on Special offer in Holland and Barratt so I stocked up today.
Love Andrea x