I’ve now been on tamoxifen for six months. When I’m not having a hot flush I feel cold, like I’m chilled to the bone and can’t get warm. If I put on an extra layer to get warm, that just triggers major hot flushes, and it’s not worth it. So I stay cold most of the time.
Is it going to stay like this all the time I am on tamoxifen, or does it get better? Will I still feel cold come the hot weather? And if my onc changes me to Arimidex after a couple of years, which is the plan, what effect will that have?
Hi RoadRunner
I’ve only been on Tamoxifen for a couple of months but I’ve been feeling the cold since chemo last year. No matter what I do I can’t seem to be able to get warm. My doctor prescribed clonidine to help with the hot flushes which now seem to be bearable or I don’t notice them as much.
What is Arimidex? I was wondering if I was going through the menopause as I’ve only had 2 periods since diagnosis last July and I am now 41.
Love Angela
I’ve been on Tamoxifen since Feb 2006. Yes in my experience it does get better. I still get “caribbean moments” but they are not so severe or as frequent as they used to be. I also still feel the cold in between times - layered clothing is definitiely the answer.
As far as warm weather goes - I certainly don’t feel cold in the summer but intense heat has triggered flushes more intensely.
Good luck!
K
HI Angela,
I,ve been on Tamoxifen for 2 months also and what you are having my GP calls menopausal symptoms. The sad thing is that after 5 years on Tam you could start having regular periods again and then start your real menopause at about 50 - 55. What Joy !!!
I was told that it is very normal to either not have periods or just have 2 or 3 a year whilst on Tam. Yes I feel quite chilly in between hot flushes too, a friend of mine calls them "Power Surges " which is quite funny.
Take Care
Love Andrea x
Hi,
I started taking Tamoxifen beginning of Oct 07. I suffer from the cold spells especially in the evening, it seems to go right through to my bones. I have a throw permanently on the settee now and snuggle up with that in the evening. I consider myself lucky though because I have so far escaped any of the other more common side effects.
Good luck
Caz x
Hi im never ever warm since starting chemo and its started to pee me off a bit, am now on tamoxifen have a duvet and blanket on my bed and still lay in bed nearly crying cos im still cold, have occassional hot flushes but i cant remember last time i felt my feet warm!!!
Hi Angela,
Arimidex is an Aromatase Inhibitor - it’s an alternative to tamoxifen if you are menopausal. Whereas tamoxifen works directly on oestrogen and can be taken by anyone, AI’s work on the oestrogen-production mechanism post menopause. After the menopause oestrogen is no longer produced by the ovaries but in much smaller quantities by the adrenal glands (I think - someone may correct me). So AI’s will have no effect if you are pre-menopausal. It is quite common to take tamoxifen for a couple of years then change to an AI as long as a blood test shows you are truly menopausal, and not just not having periods due to the treatment.
Thanks for your replies ladies. It seems that I will just have to grin & bear it. Layers are all very well, but I have problems at work. I work in a professional office & wear a suit. Most of the time I wear my jacket as I am cold. Then when I have a hot flush I have to take it off. Then the sweat dries on me & I am colder than ever so the jacket goes back on. I sit opposite a young man of about 26 or 27. I often wonder what he thinks of all these changes.
Hi
I am reading all the comments about being cold with amazement. I used to be a naturally cold person until my chemo was changed from FEC to TAX and I have felt like I am on the verge of spontaneous human combustion ever since. I swear people can see a heat haze above my head sometimes! I have been on tamoxifen since November and I don’t think I have spent a whole night under my duvet since. Sometimes it makes me really sad cos I used to love snuggling up in bed with my partner [well I still do] it’s just that now I only last about two minutes before I am melting.
Just goes to show we are all the same but different I suppose.
I have only recently joined the sight and I find it really helpful to read other peoples experiences, I should have joined months ago. I don’t feel so alone now.
Take care everyone
AJ xxx
Hi AJ,
Glad you’ve joined us on this site - it makes a big difference to coping.
I too am too hot at night, and can no longer snuggle under the duvet. I spend large parts of the night with the duvet thrown off and arms & legs everywhere trying to cool down. Then come the following day I am cold again. It doesn’t seem fair!
RoadRunner
I think the way this site has helped me the most is finding out I am not the only one with lop sided boobs, fluffy hair, no toe nails, abit of a beard, pubes that only grow round the edge not in the middle, no temperature control whatsoever, the ability to laugh and cry hysterically [sometimes at the same time] and the attention span of a goldfish!!
Life must have been so dull pre-BC.
AJxxx
Hi AJ,
Glad you not feeling so alone, I used to read posts for advice and info, and did not join in for a whileI.
I had 4 EC and then 4 Tax, really got the heat going. Loved your comments so true, I could of written them myself, what did we do before all this!!!
How far you on your course of treatment or have you nearly finished
Take care
Dawn X
I am new to Tamoxifen, only 3 weeks on it, but I have found that it has reduced my hot flushes compared to the ones I had on chemotherapy (tax). I wasn’t expected that! And I think that I’ve got warmer during chemo I certainly didn’t need to resort to the warm pj’s. And I now know why cardigans are so important to women of a certain age.
Pauline aged 41 and 3/4
Hi Dawn
I have finished my treatment, just on the tamoxifen now but the heat thing started with the TAX and has been going ever since. My family have spent the whole winter with their coats on cos the heating is so low, maybe we have found a way of reversing global warming, just give everyone a couple of doses of chemo say in November followed by some tamoxifen, bingo planet saved! Unless of course its the 44,000 of us each year making it worse, hadn’t thought of that.
AJxxx