Hi all, well, started taking this lovely little pill at the end of my last menstrual cycle, get the hot flushes, the sleepless sweaty nights, the temper of a shrew, and blow me, today, the period from hell!!! how much better does it get!!! could cope with the menopausal symptons so much easier without the actual period as well! how unfair is this???
love to all
Alisonxx
Hi Alison,
I feel for you. I started tamoxifen 6 days ago and was looking forward to periods ‘becoming lighter or irregular’. So far no sweaty nights for me - I gather it’s early days still - but I know where you’re coming from. I had night sweats before my periods for some time (without being menopausal) and they were just hell! Especially in the winter in a country house that was so cold you could have been out in the open.
I read somewhere on the forum about two different medicines which alleviate the side effects of tamoxifen, one’s an anti-depressant. Will be adding to shopping list!
lots of love
j
Hi J i’ve found that at least zopliclone gets me six hours sleep a night, i used to be able to sleep for england, now i’m up doing housework at 6am. mind you, if my mental health gets any worse, then yes the anti-depressents would be an assett, but am hoping to see the gyni soon about having the ovaries removed, roll on that day!
lots of love
Alison xx
hi, i have been on tamoxifen for just over a year now and have suffered the hot flushes.
the anti depressant is called effexor.
my i ask which brand you are taking?
i have tried a few, well what ever the chemist has at the time…
APS, Generics, Sandoz and cp pharmaceuticals.
the later one is the one i get on with the best, still get flushes but not near so bad or as many.
sharon. x
hi Sharon, my first lot has been generics the new one’s i got today are made by cp, i am feeling better just reading what you’ve put
Alisonxx
Check out Pro-Banthine on the web - it really helped me when I was on Tamoxifen and literally dripping round the clock. It stopped the sweating and the only side effect was a dry mouth which chewing gum helped. It is on prescription.
Hi Olivia, thank you for that, i’ll look it up
Alison xx
I have been taken Nolvadex for over a month now and apart from sometimes feeling a bit achey when I get up, I haven’t experienced any side effects. When I found out that what I had was hormone receptive and that I would be presecribed Tamoxifen, I made some enquiries and found out that the purest form of Tamoxifen is Nolvadex - it’s more expensive than Tomoxifen- but has been shown to result in fewer side effects. I asked the oncologist to recommend to my GP that I should be prescribed Nolvadex - he did and I had no problem geting it.
It may be that I have just been lucky and even if I was on Tamoxifen I might not have had side effects, but Nolvadex might be worth checking out?
Janeyb
Mine still hasnt turned up…4 weeks post chemo…4 weeks since last period…2 weeks into taking tamoxifen…just had sore ankles so far…no night sweats as such…but early days still…i have a feeling its going to turn up and wollop me some time this weekend…just not tonight cos im going out for a beer or three…but i know its going to turn up and say wooohooo remember me…im the thing that wont go away lol.
I have been taking generics tamoxifen 20mg for10 days, and I don’t feel too bad,
a few hot flushes and still not sleeping very well, but I wasn’t sleeping that great through chemo, any suggestions. I have never had a period since my second chemo. hope they never come back.
Love Carolyn159
Hi Janey, going to wait to see about the ovary removal first before pushing for Nolvadex, but i will go for it if the wait is long, tamoxifen has hit me like a ton of bricks, but could all be part and parcel of general mental health as well, oh well, thanks for the replies all of you
Alison xx
Hi Alison,
Interested in your comment about ovary removal. Have you spoken to your Onc about it. I’ve posed the question but haven’t had a proper reply yet, needs to be answered by the top guy. I’ll do (just about) anything to prevent a recurrence and as I’m ER+ it seems to be sensible to just have them out! I’m 42, had my kids, so what’s to lose?
My Onc suggested that it might not be very useful, as your breasts produce Oestrogen, as do your fat cells!
Jane
Hi Jane, i actually approached my onc about this, due to my mother and my grandmother being very late in going through the menopause, i do not want to go through a pretend menopause, then have the real thing, how would that benefit me, think my onc thinks i am slightly clinically depressed, but he is referring me to a gyni to have the ovaries removed, at 44 i do not want anymore kids, but chance would be a fine thing considering i was sterilised at the age of 29! as far as i can make out, the ovaries produce the most oestrogen, but the aromataise inhibitors block where the other is produced, and as for breasts producing it, well, on one side i only have back muscle now, so not much chance of that doing that! so that halves the problem.
Alison
Alison,
Please push for NolvadexD . If you go on the American web sites - esp JohnsHopkinsBreastCentre - Ask the Expert, you will see that NolvadexB is the preferred route re Tamoxifen. They seem to be far ahead of us
Janeyb
x
Well I am not taking tamoxifen as I am post menopausal, apparently! So have had 3 days only of arimidex. My onc said she would give me a blood test first to double check my ovaries def arnt working, but when I told her my past gynae history (ectopic pregnancy = damaged and then removed ovary, other ovary had bad cysts on it, menopausal symptoms started age 38 yrs, now age 48), she said in that case we didn’t need to wait for results of blood test.
I asked her what would happen if I wasn’t menopausal and was taking arimidex, she said it would kick start my dormant overy to work again.
This is a worry as last night it started twinging! I know the pain well because of the cysts, I used to get mid cycle pain and this was the same. Shock horror, don’t want to be going through all that again. Hope things settle down.
Alison, bad news on the period, I’ve not had one for about 6 yrs now and bloody well hope I don’t now!
Irene
Sometimes i think its awful that the doctors who are treating us for bc don’t look a lot closer at our medical history, sure it would save us all a lot of stress, still on the period Irene, not had one this bad for years, could bottle it and have enough for a blood transfusion if i needed one!
Jenny, i have just started on a different brand of tamoxifen, my gp gave me two months worth to save on prescription charges, but am hoping to have seen the gyni before the two months are up, and if he gives the go ahead for my ovaries to be removed, then I’ll be off them for good! but if there is going to be a long wait, i will definitely ask for the NolvadexD.
Thank you both
Alison xxx
hi girls,
im on tamoxifin now only one month as i waiting to start chemo (cmf).
dont really have hot flushes yet ankles and knee bit sore especially in the night time is this normal???
im 30 and i had a hysterectomy done in may due to medical problems this was before i new i had the dreaded BC,
so im going to say it to my onc next time i see him would it be a good idea to get ovaries out as when i had hysto gynae left ovaries in, but i dont need them so WHAT IS THE POINT OF GOING TRUE A FAKE MENOPAUSE FOR 5 YEARS THEN HAVING TO GO TRUE IT AGAIN ,THAT IS TORTURE FOR ANY WOMAN…
wud getting my ovaries out mean the cancer would not come back??
breda
Hi Breda, getting the ovaries out just means one place less to produce oestrogen, but i want mine out as i don’t want two menopauses, and yes, my knees and ankles hurt more in the evening! as to the cancer coming back, think thats just down to luck, but the less oestrogen we have the better as thats what helps the cancer to grow, don’t forget though, i am mid forties, do you really want to go through the menopause that young Breda? at my age its not too bad, but you’d need to discuss it with your onc
Alison xxxx
thanks alison,
i am seeing oncologist next week so i will mention it too him, i also going to see gynae so will see what they say as you said im young so see what happens
hope your well
breda
Hi Breda, yes i am well, its not so bad for me at nearly 45, just feel so much for you younger girls having to go through the menopause so early, pretend or real, think having your ovaries removed is something that you really need to think about, the only reason i want mine out is that my mother was 54 when she died and was still having regular periods until her death, my maternal grandmother was 58 when her periods finished, that is the only reason i want my ovaries removed, as i don;t want to reach 50 and have maybe five more years of periods, then go through the menopause again, it has nothing to do with the cancer coming back, and at my age, well, i can’t have hrt now, but just want to have a normal life again asap, as we all do
Alison xxxx