Tamoxifen SE's and Clonidine (or other beta blockers)

Hi there. I am 48 and technically still pre-menopausal despite the impact of chemo meaning no more periods (a bizarre bonus I guess!). Anyway, I have now been on Tamoxifen for roughly six months and am happy about this, even though I suffer evil hot flushes and, more recently, like some others on here, low backache.

My flushes are typically 10-12 times a day and 2-3 a night, rising to double that in what I assume are peak oestrogen weeks. I use a Chillow Pillow at night which is fab, but by day it’s a case of putting up with it.

At my discharge oncology appointment today (hurrah!) the doctor said that Clonidine was a possible option, and she would write to my GP accordingly. I just wondered if others have tried this, and if so how you’ve found it?

I will definitely persevere with the Tamoxifen whatever as my cancer was high grade and I really don’t want it back!

Thank you in advance lovely people.

Anyone? Bumping in the hope someone has any experience/thoughts.

hi there , last year at the age of 48 i tried the clondine because of the sweats that had me waking up all night , sadly they didnt work for me , this was before my bc so i dont know how they would be with tamoxifen ,when i was diagnosed in may i had many sleepless nights that were leading me on the road to depression so doc prescribed sleeping tablets short term , they worked in the respect i slept through the sweats butof course now i am off them the sweats are haunting me again , tamoxifen is not agreeing with me at all and i have never felt so miserable which is hard on everyone around me , i cant remember the last time i laughed , i have read somewhere on here about a " chillow " , would love to know more if anyone would be kind enough please xx

Thanks Trish, that’s helpful to know. Sorry you are having such a bad time with the Tamoxifen - hope your GP or BCN can offer something useful as a way forward.

Regarding the Chillow it is a thin plastic pillow a little smaller than a real pillow in size that contains some sort of special foam. You activiate it by pouring in water (through a dedicated hole a bit like the big bung you sometimes get on lilos or paddling pools) then you have to do a bit of faffing with rolling and squeezing to get the air (and excess water) out before you can use it. You can use it on top of a pillow or inside a pillow case or even under a pillow, and you can chill it in the fridge if it isn’t cold enough for you! During my chemo phase when I had no hair it was way too cold to lie directly on it, so I tucked it inside the pillow case on top of my pillow; now I have hair again I lie directly on it. Wipes easily (the plastic is a bit like the stuff hospital matress covers are made of)and light enough to pop in a case to take on holiday (I forgot to take it and regretted it!)

Some people find they don’t help, and a few have experienced leaks, but I have been thrilled with mine. Still sweat a lot at night but it keeps me a bit cooler and I sleep much better.

They cost about £25 from Amazon but it may be worth acting dumb and asking your BCN… the hospital I’m with have then available (free) on request… even if you had to pay a prescription charge (don’t know which bit of UK you’re in) they just might be willing to get you one.

I’d say definitely worth a try, especially if you can get the NHS to pay!

thank you for that revcat , i shall mention to it my bcn when she decides to call me back = i left a message requesting call back on thurs ! guess they are busy and will get around to me when they can , chillow sounds marvellous as it is very often the head sweating that wakes me,am actually sleeping on top of quilt with fan directed at me and still damn things waking me , partner complaining he is cold - oh to be a man eh xx