starting to tamoxifen any advice welcome

Hi i was dx in dec 2010 had 1st op WLE in jan 2011 then had chemo and just had MX op 8th aug now i have to start taking tamoxifen.I was very happy yesterday i just got the all clear but iam wanting any advice about tamoxifen if anyone is having any se when is the best time to take it morning or night
maxine xxx

Maxine, I think it’s very much an individual thing. Some people find mornings better, others find evenings better, some get loads of SEs others get none, most have something in between. Also keep an eye on your SEs and if you find you are suffering, try swapping to another brand, as again some people’s SEs are less on a different brand (but it’s not the same one for everyone). If you do end up with unbearable hot flushes your GP may be able to prescribe a very low dose of Citalopram or Amytriptylene (sp?) which although they are anti-depressants in much higher doses can be very helpful in cutting the hot flushes at low doses, so consider them too.

Other than that, the only thing to do is remember to take the bloomin’ things!

Hi Maxine
I take mine at night, I have had se’s but they come and go. I have had bad sweats/drownings/small sweats/ no sweats at all. Everyone is different and has different or no se’s at all. I have very disturbed sleep but I have always been like that when I have something on my mind lol but please remember that tam is the best thing to be taking (I am always being told this)

Hope your se’s are small ones
Lizz xx

I take mine at night usually with a cup of green tea! The only se I have are leg cramps (nearly always at night) and a feeling of heavy legs when I get up in the morning. This usually passes very quickly. I find that if I drink a lot of water before bed the cramps are not so bad. I also drink tonic water during the day as that is supposed to help with the cramps. .

hi, I have suffered from leg cramps since I was a little girl. Tonic water is good, but the very best one is fevertree, it has real quinine bark in it rather than just a chemical. Try switching your salt to sea salt, because it has iodine in it which is good for cramp, or by some powdered kelp (waitrose again) that you can sprinkle on food to help boost your iodine.

Hi, I take my tamoxifen at night and do experience some mild night sweats and periods have all but vanished (yay!)but otherwise none of the other SEs people mention. I make sure I always get the same brand (Wockhardt) as it seems to work for me without SEs but know that others don’t like Wockhardt but prefer a different brand. As it is a generic the active ingredient is the same but the bulking agent and coating vary between brands and some suit individuals better than others.

As others have said, my advice would be, if you do get SEs, try a different brand and see if they go away. If not, try to stick to the same brand. I check my preferred brand is in stock before getting my prescription filled xx

Nothing really to add, the others have said it all.

I suffer the boiling/drowining side effect quite a lot from this little leprechaun of a drug (Tam O’Xifen) so I use a chillow pillow (you can buy them online from e.g. Amazon or if you have my amazing BCN she will give you one if you ask her) which I find helps me sleep better. Not everyone finds them helpful.

For me, it makes no odds what time I take it, or it seems which brand I have (on second of three possibles now) my flushes are as predictable as ever, and even the amount of tea/cofee etc makes no odds.

I also sometimes get leg cramps at night, but whilst painful they pass fairly quickly.

As the others said, may your s.e.'s be little ones and Tam do his job successfully.

has anyone tried a neck buddy?? thought i would get one for drumming, and to keep by me just incase i get hot flushes when i start tamoxifen

The past few nights I’ve been having rubbish sleep, I’ve either been boiling hot or freezing cold - Boiling when the duvet is on me, freezing when it’s not. So I’ve been tossing and turning.
I’ve not started on Tamoxifen yet, wondering if my periods are coming back shortly because I’d get like this just before a period in teh past - think it’s a hormone thing and all mine are screwy anyway.

It was better when my OH was sleeping on a mattress on the floor of our room when I was doing chemo so I didn’t wake him up, I was up and down all night, off to loo, light going on to read etc. It was decided he’d sleep sepearately.

So if I was getting hot/cold then I could roll over in the bed to the cool side, now I can’t do this. I daren’t say anything to my OH about him going back on the single mattress as it seems unfair.

May have to dig that chillow out!

El K, do you have a spare sheet? I found lying naked did get a bit chilly, but a sheet or duvet cover (with no duvet) was handy.

WOW thanks ladies i didnt think i would get thismany replys in a day
OBOY nice se to look forward to
i already get the hotsweats from going thru the change thanks to chemo
i will let you kmow how i get on thanks again
Maxine xxx