Tamoxifen

Hi there. Just wondering about other people's experience with tamoxifen.  I'm 37 & started on it in Dec.  Don't have any major side effects.  My oncologist said it wouldn't affect my fertility but by now my periods have almost completely disappeared.  Has this happened anyone else? Thanks for taking the time to read this.

[Valerie68]

Hi vf aingeal 

I'm 10 years older at 47 and I'm on tamoxifen since last September. I'm not menopausal according to oncologist in that I've plenty of estrogen being produced . However the side effects are killing me . Insomnia ( I never ever had a problem sleeping before) flashes and sweats and extreme fatigue. I haven't had a period either in 12 months but was told the chemo is to blame for that . I've been advised that I could still become pregnant ( eek) 

[Hidden]

Hi, I'm 35 and started tamoxifen in January, I haven't had a period since October but this is due to chemo I've been told. I have hot flashes and severe night sweats, previously excellent sleeper, apart from that I don't have any other side effects. My onc has said that after a year with no periods they can do a blood test to see whether I am in fact post menopausal.

[Hidden in reply to Hidden]

I haven't had any chemo. Had mastectomy last Sept then done a cycle in fertility clinic so I have embryos frozen,advised by my consultant.  But since Dec I've only had very slight period (an hour or so) twice.  I have been told not to get pregnant while on tamoxifen so was just wondering how it affected others. I get night sweats & very tired some days, sore joints but nothing too severe thank god

[Heather-lockwood]

I was on tamoxifen for 10 years. My periods stopped after chemo but blood test showed I was still fertile. I didn't really have any side effects other than getting a bit hot at night but nothing too bad 

[nikonBlue]

Oh lordy!!

I have been on Tamoxifen for 3 months now and am being crippled by the awful side effects! Guess I'm just unlucky but the flushes are severe and relentless 24/7, so much so that i'm having to change clothing at lease 3 times a day (yes, lots of washing every day now). On top of that I too have joint pain. I am 61 and do have some arthritis anyway but this has been emphsised by the tamoxifen. It's the 'power surges' that are the worst. I am soaked when they attack me and it's so very embarassing apart from the distress it causes. My oncologists has now put me on Megastrol Acetate in an endeavour to combat the flushes.....we shall see, i've just started taking them this week. And now, I need to go shower and get out of this wet tshirt!!! All i'm doing is sitting here typing and it's getting me again!!! So very debilatating

Blue x

[Lainey3615 in reply to nikonBlue]

Hi Blue

I can sympathise with the hot flushes. I bought a medical magnet off of Amazon which you put on the elastic of your pants and it helps cut the flushes right down. Also a Chillow pillow, Amazon again, which helps with the flushes whilst sleeping. 

Hope treatment goes well for you.

Hugs xxxx

[nikonBlue in reply to Lainey3615]

hi there,

I got a chillow pillow but find it no use whatsoever and as you know it cost around £30! Not heard of the medical magnet tho and i'm honestly willing to try anything at this stage. I can't go more thsn about an hour before i'm drenched again, and it's relentless 24/7 so sleep? what's more than an hours sleep like!!!!

Treatment has finished now and am just in the throws of getting back to work and adjusting to the 'new' normal after my cancer and am fine.You take care

Blue xx

[1735 in reply to nikonBlue]

Hi there.. I'm the exact same as you.. Only my doctor prescribed me a light sedative that makes you sleep I only waken once or twice during the night now 😊phenergan is the name of them they actually are an antihistamine and not addictive like a sleeping tablet would be worth a try x

[nikonBlue in reply to 1735]

hi,

I just wonder if they are ok alongside Tamoxifen? There's so many things we can't take if we're on Tamoxifen. To be honest, if this continues the way it's going i'll be asking them to take me off it!! This is just so very debilatating. I'll check out this medication though,

thanku

Blue x

[1735 in reply to nikonBlue]

Yes it was my own doctor who prescribed them.. I know the flushes are a total nightmare but if you can get a decent sleep at night it helps you cope a wee bit better during the day x

[Surviver in reply to nikonBlue]

Tamoxifen is awful  been on it since 2013 side effects bad but Its a small price to pay I'd rather have life so I'm afraid it's keep taking tamoxifen 

[nikonBlue in reply to Surviver]

off course! The oncologist told me a few weeks ago that I am very 'low risk' for recurrance, and that they might consider taking me off it,though not quite sure  how that is when I was told at the beginning i'd be on Tamoxifen for 10 years. This sent me into a panic and off course I'd rather suffer these awful side effects than bose the fight, but seems to me they may take me off anyway. All so very confusing!

Blue

[Barnowl1450 in reply to nikonBlue]

Hi Nikonblue.

I have been taking Tamoxifen nearly 5 years now.

My side effects started about about 3 years now, Fatigue, out of breath, pain in joints all over.

I take my Tamoxifen at night & just recently in the last 6 months I have been getting very heavy sweats, so I will try taking them in the morning so not wet the bed with my sweating.

Im a 59 year old male who had breast cancer & now nearly 5 years clear.

Wish everyone well

[nikonBlue in reply to Barnowl1450]

hi Barnowl,

It's pants eh? All this side effects. I've now been on Exemastane for a few months and the flushes are not as often though still severe when they happen but at least it's keeping the washing pile down as I'm not having to change clothes so many time a day!!!

I'll be 3 years this September so fingers crossed eh?

stay well

Blue x

[Pogen]

Hi, I started tamoxifen last July. I am 46 and have had regular as clockwork periods since about aged 12. At first, my periods became very irregular on tamoxifen but now they are back every 28 days but lighter. Apart from that, I get hot at night and sometimes don't sleep well. I didn't have chemo which probably has more impact on periods...? My understanding is that tamoxifen blocks absorption of estrogen by cells but it doesn't stop it's production therefore periods are likely to continue.

[Burnsie777]

Hi, I started tamoxifen when I was 32, following chemo and radio. My periods stopped after chemo, but came back about 6 months after, when I was on tamoxifen. I did get a lot of side affects and thankfully I have now finished my 5yrs but refused to take it for longer, and now a year post tamoxifen, I am starting to feel normal and like my old self again. X

[Merechat]

I started taking Tamoxifen in 2011 and have agreed to continue for a for a further five years.  I found the side effects difficult to cope with for about a year, but more manageable now or I've just got used to it.  I have itchy skin and scalp so take Fexofenadine for that.  The crazy powerful hot flushes are less frequent though rarely have heating on as my core temp seems to be higher than before - so even in winter, I feel warm while others are cold.  The worst hot flushes I get are about 30mins after taking Tamoxifen so I take it when I come home from work and strip off in preparation and distract myself by going online or having phone chat with my Mum. 

I've only had about 3 or 4 periods since finishing chemo and the most recent is almost two years ago.  I will be 49 in two weeks. The best side effect of this horrendous chapter in my life is an early and abrupt end to regular heavy and painful periods - every cloud and all that!

Physically, in general, I am no where near as fit as before treatment, arthritis, fatigue, sleep disturbance (except when on hols in Lakes last week - best sleep ever!! so maybe other things are at work here?), joint pains and struggle to cope with heavy work on my allotment, in fact I am suffering from intercostal muscle pain on and around mastectomy site from working on my plot on Thursday - ouch! But, I am not giving up, I still have weight to lose, formerly a size 10 9-10stones to size 14-16 12stones. I find growing things very therapeutic and I sometimes pay someone to do really heavy stuff.

I keep putting off reconstruction, horrid surgery and I haven't got round to quitting smoking - oops!

[Tracey06]

Hi, I'm 43 and started tamoxifen in Dec. I have only had one slight bleed since. I haven't had any other side effects. I was wondering if it was due to the tamoxifen! I didn't have any chemo after my mastectomy either. X

[showmustgoon]

Hi . My periods stopped when I was on Tamoxifen at 36. I had symptoms of menopause hot flushes night sweats and generally wanting to kill people ! When I stopped taking it my periods returned until the natural menopause when I was 51. I stopped it 4 years as I had cervical precancerous cells which it's not advisable to carry on with tamoxifen . But yeah ...tell your friends and family to keep you away from sharp objects !

[Surviver]

Yes I started taking tamoxifen in 2013 I had 2 periods then nothing since I think it will affect your fertility if it stops producing oestrogen 

[Mell]

Hi I started on tamoxifen in Dec 15 at 52 and premenopausal. Since then normal periods but this month all the cramps and spotting for an hour then 18 days later having another period which is lightish but never ending! Oncologist told me it wouldn't stop periods 😩 Is there to be no let up?! Other than that so far I seem to be OK on it apart from a rash on my face which appeared after about 10 days of starting it but seems to be subsiding a bit now thank the Lord. 

[Nixh]

I haven't had a period since my second chemo, am 43 not menopausal, a few odd symptoms before hand, and periods were less regular but still having a normal period. Started Tamoxifen the end of January, hate the hot flashes and haven't slept properly since last May (from diagnoses) the flushes wake me up and I can't get back to sleep as if I do I then get bloody cold! 

I agree with Surviver the effects are nothing in comparison.. as would rather still be here! The aches are a pain, getting out of a chair in the evening is an effort. I play netball 2-3 hours a week and feel so much better after I've been... so maybe need to exercise more! I do think it helps xx

[brianna29]

I have just started on tamoxifen for the last three weeks.  The only side affect i have noticed at present is the night sweats.   This is being made worse by also going through the menopause.   I have also found i get tired easily.

[1735 in reply to brianna29]

I know it's awful but we need to take it.good luck

[Hidden in reply to 1735]

I don't mind taking it as I definitely agree it's more important in the long run if it keeps me healthy. I was just wondering about the periods as anyone I know who has suffered breast cancer has always been menopausal before the diagnosis so I didn't have anyone to ask. I'm glad now that I did. At least I know it's not just me. Onwards and upwards xx 

[Janny1306 in reply to Hidden]

Onwards and upwards  hun ✊💞👍

[Abcdefghijkl60]

Hello ! I have one month left on this awfull drug I hope ! Or they may say another five years .. I have felt awfull hot flushes night sweats , joint akes .... But won't give up ,😀😉👍I swim every day and still go  jogging  and  .... Run a cleaning bussiness  which is very physical  ....never give up it is tuff though it has got me five years on !

[lizzyHZ]

I hade a lumpectomy in September then 16 bouts of radiotherapy - luckily no chemo as there was no spreading to the lymph nodes, and it was an estrogen tumor and they believed that the whole of the tumour was removed

I started taking Tamoxin in October - I have always had irregular periods except when I was taking the pill and this hasn't changed

I didn't have a period for a couple of months after my surgery, but then they came back.

But I think it is just the body letting you deal with enough it can take as I always get really bad periods, heavy bleeding, bad headaches, tremendous abdominal pain - I have had 2 periods since I started taking Tamoxin and they followed the same pattern

Even though I am 51 years old, test have shown (due to another medical condition) that at the time of the surgery I wasn't even pre-menopausal

Side effects have not been noticeable for now, but I was wondering whether they might increase the longer I take the tablets?

I have been warmed off anything containing soya - if anyone has any information on health supplements or other tips or tricks that I can take, or for which I must be aware that would be really useful information