I had breast cancer nearly 9 years ago now, the first time was just a lumpectomy and when it returned 3 years later I decided to have both boobs removed and complete reconstructive surgery. At that time I also had my overies remove (I was 32) I then went staight into the menopause but i think I got off very litely. However, now i am having real problems with becoming too hot. Its not like hot flushes as I do not go red, or then go cold and sweaty. I just become overheated. I cannot cuddle into my husband of a night and am always having restless nights due to being so warm all the time. I have tried evening primrose oil etc, but nothing seems to work, and I have been told that I cannot take anything that has natural oestrogens just in case.
Any tips greatfully received.
I have been told my biopsy was 8/8 which is as high as they go, VERY hormone receptive, so not able to take many of the usual remedies, ie Black Cohosh, Flash Busters etc. My pharmacist said to try Red Clover as it has no oestrogens, so I’ll discuss that with the oncologist next week when I have my first apt. Lots of contradicory advise on alternative treatments, a bit of a nightmare trying to sieve through it all. I was alos told about a “Chillow Pillow” which arrived today, (Can only get it on line) First night with it tonight, I hope it works, I’ll try anything!!!
The Chillow pillow is great. However it doesn’t last all night. It takes up the heat from you. I use it as my “underpillow” and then when I feel really hot, I swap it to the top.
I also really recommend the Australian “Cobber” which you can get on line in this country for about £13. You soak it in water and put it round your neck. It’s wonderful
Sharon x
The cobber is the best! They don’t look so wonderful, but I found someone to make them in different fabrics so at least I can colour co-ordinate them not to look too obvious! Believe me, I have tried everything & have been suffering hot flushes for almost 10 years, both before & after diagnosis. I am the one who sits out in the cold in winter, who has a car with 2 separate air cons - both at the lowest setting & aimed at me, (never mind passengers!), who needs windows open in all seasons & weather, sleeps in summer jammies in winter, who kicks off bedding in winter, etc. etc. Feel disgustingly wet all the time & have several showers a day, but can’t have one late at night because it wakes me up & then I can’t get to sleep!Can’t use wild yam cream or any soya based products. THere is a anti depressant called Efexor which apparently reduces the hot flushes, but having tried it, I found that while it cheered me up considerably, it did not magically remove the flushes!
Cobber is great - also use old fashioned hand held fans. Friends bring me exotic ones froom their travels now! Anyone know how long these flushes last?!
On zoladex and arimidex - for last few weeks - loads of hot flushes - been counting them!
Seems to help sleeping with window open?
Also my oncologist strongly advised taking sage tablets (available at health shop) so hope these work, she also recommended chillow pillow so will get one now!
Have been told it will get better after about 3 months - at times it feels like being on withdrawal from a strong drug (not that I know) just have to get through each one…
I’m on Tamoxifen and Zoladex. I get hot, but not really what I’d typically call ‘hot flushes’. What I’ve been struggling with, especially at night, is being hot one minute – off goes the blanket; then I feel cold, so blanket goes on again. It’s backwards and forwards all night!
I’ve tried sleeping with the window open, hoping that’ll keep things on an even keel, but it makes no difference.
Anyone else have this kind of thing?
(I do get hot/cool during the day although I guess it doesn’t bother me quite so much then)
love,
Jacki xx
Hi all
I am being plagued by sweats and flushing day and night
Where can I get a cobber from
Cecelia. x
Hi BunnyMum
I’m still on my chemo and getting hot as you i’ve been struggling mostly at night. one minute beeing really hot, off goes the blanket, then freexing on goes the blanket. i’m turning my pillows over and over and my bed sheets get rather damp and cold.
As you nothing seems to help. i will be getting one of those chillow pillows i’ll give any thing a go as i’m due to go on hormone therapy for 5 years soon.
i mention it to my oncologist and he just gave me some sleeping tablets, whichhelps a little only wake up now about 14 times instead of the usually 30 odd ( he he)
if i find anything else out i’ll let you know, see the breast nurse on thursday.
love
Karen
Hi Kaz
I am suffering too and not sleeping which in turn stresses me out then I get weepy. It’s a vicious circle. We have ceiling fans in all the bedrooms. I think they are about £20. Very easy to fit and can be put on two different settings depending on if you want cool air on you or just to circulate the air. They really do help. Also I layer the bedclothes. I have a sheet then a lightweight quilt over it then a blanket. My husband, who is renowned for never feeling the cold, sleeps under the lot and I lie on top occasionally pulling the blanket over. A kingsize bed helps too as I can push him well away from me then I just have our Yorkie’s little hot body to avoid. Lol
Love
Debbie
I also have a chillow pillow, which really works. You can get it on Amazon, I think it was £19.95
Hi Ladies,
I saw my GP yesterday and refused to leave the surgery until he gave me something for the hot flushes etc - they have been making my life an absolute misery - he was very sympathetic and has given me Sertraline to try, they’re and anti-deparessant but can be prescribed for us ladies who cannot use HRT.
Please God these work and I will keep you all informed
Angie
Hi Jackie
I understand your comments, you wake up roasting, remove covers, it passes quite quickly and then it’s cover up again!
I didn’t realise how wearing it was, 5 months of standard cheap Tamoxifen, at least 6 hot flashes a night.
I got switched to Nolvadex D, NO HOT FLASHES FOR 12 DAYS!!!
I can’t believe it, maybe I was just settling down but honestly, I feel human again, brain beginning to function again (a bit!)
Try it…the doc will deny that theres any difference…but they haven’t taken it, nor do they do our extensive research!!
Claire
Hi Claire,
Really glad to hear that your hot flashes are settling down! I have been on Nolvadex D since Day One. I don’t play the blanket game every night, I’m very glad to say, but it can get very frustrating when it does happen.
I’ve read lots of comments on various forums from women who get results from changing brands of Tamoxifen – I think you’re right about the doctors. I think they can do all the research they want and read all the reports that come out, but until they experience it for themselves…
love,
Jacki xx
Hi Claire
My doctors refuse to precribe Nolvadex. Consultant wrote to them asking them to change my anti depressants to one beginning with V can’t remember name but they are supposed to help with hot flushes. Again they refused. They said they weren’t allowed to prescribe the drug only hospital consultants can. Very confused now. Surely consultant telling them to prescribe it is the same and anyway you only get 2 weeks supply from hospital pharmacies so how is that meant to work???
Love
Debbie
Hi to everyone
I have posted on various threads about the dreaded flushes and sweats. See my thread on Clonidine, have just upped my dose and although still getting warm and had one in the town yesterday that warrented my small towel that i carry everywhere with me, the tip of the flush and sweat has been knocked off. I can now actually go into the town and even managed a meal with my best mate, my quality of life is improving with these tablets, though i must admit they are not all gone, surely doctors must realise quality of life is so important in our recovery, when i feel well i can achieve almost anything but if i am standing by my sink sponging myself down every 20mins then the old depression (my life will never be the same again) does kick in. I am lucky to have a very sympathetic GP who is prepared to try anything that i suggest that i have seen in various threads, that in itself is half the battle. The Breast Unit so understaffed, just shrug and make out that i just have to put up with them as with most hormone therapies they will subside in time! I just want to know a date, e.g. 31st Jan, I hate that word ‘time’.
Hope this helps some of you out there
Suzy
I also bought a cobber, it is great i use it at night and under my shirt in the day if needed. It stays cold for 3 to 4 days which is great as you can carry it round it your bag in case you need it when your out.
The link i used is
benthamsports.co.uk/Product_Details.asp?pid=102&deptid=20&subcatid=30.
But have been told that you can get them from most outdoor adventure type shops.
Hope this helps.
Gaynor
x
Hi
Posted several times on this. I take about 16 Clonidine a day but some ladies are helped by low dose anti-depressants including Efffexor. Evening Primrose oil is useless and Sage no better. If you are ER+ then Red Cover and Black Cohosh are banned. Olivia07 had great sucess with Pro-Banthine. I’ve tried Mulla Mulla, an Australian Bush Flower Essence - seemed to make a difference when hiking in 95 degrees of heat.
Other than that I eat cold meals all weak, avoid hot drinks (just great with winter looming), wear thin layers and generally curse the lask of remedy for the flushes/sweats and the fact there is no focus on this within the medical teams. Just concentrate on your survival and be grateful you’re still here sort of attitude.
Yours in exasperation.
Chillows are ok to have on your back but I cannot sleep with one.
hi dahlia
im surprised that you take 16 clonidine a day, they are blood pressure tablets .im on 2 at night and 1 in the morning they are prescribed 2 three times a day but when i increased my blood pressure went crazy and i felt ill. it sounds an awfull lot 16 a day ,be carefull love get your blood pressure checked regular. i ended up in a&e where i work jean
Hi Gobby
Not sure if you will get this being quite an old thread now. Sorry you had trouble with your Clonidine, I am on 9 a day, three with each meal. When i saw my GP last Friday he said Clonidine was such a safe drug i could up them to 18 a day if i wanted to! I was already thinking of my holiday in April. I do know you must not stop taking them without the advise of a doctor who must be informed of your choice. I still get dreadful sweats which i use my small towel for but they are not so often as they used to be (3 an hour and dripping) with the Clonidine i am more in control and can sometimes do a whole hour without, once i went 2 hours, thought i had them licked, then had a massive one where i had to take all my clothes off and dry myself from top to bottom, literally! Without my clonidine i would not have such a good quality of life and not be able to do my little part time job which i love, red and dripping is such a bad look!
Hope you find something that helps you soon,
Suzy
Hi All
Here’s a thought for you on the positive side of hot flushes.
The heater in the bathroom of our old Victorian house has died on me, and we now regularly have ice on the inside of the window of a morning. But do I have problems stripping off for my morning shower? Not at all! Just wait for the next hot flush, then run in singing! Hurray!
Keep smiling. Stockbeck.