Does everyone have bad side effects with tamoxifen?

I was diagnosed with breast cancer nearly 3 weeks ago. 5 days later i had a lumpectomy. The results from that were good inasmuch as my cancer was graded 1, and there was no spread. i have to have radiotherapy, and i am being given a prescription for tamoxifen. I’m really quite bothered about this though. Looking at this site and talking to some other people the side effects seem horrendous, particularly if you’re pre menopausal, which i am. I’ve read the literature and don’t feel at all reassured. There seems to be an issue too about whether the benefits will be that great in my case. I’m going back to see my consultant next week to talk about it, but i’d really like to know - is there anybody out there who has a good word to say about tamoxifen and hasn’t had lots of side effects?

Hi,

I must admit i feel very privileged to be saying this but i have been on tamoxifen since June of this year and yes i have put on a little weight about 1/2 a stone which isn’t really that much up to press.

But other than that i feel absolutely fine, i do get the hot flushes at night mainly a few in the day but they are not bad at all. They are not like some people who are dripping wet. Whom i really sympathise with.

I know i am one of the lucky ones and thank goodness for that but if this little white pill stops the little bug…s returning what is the alternative some of the other drugs could be equally as bad.

So my advice would be give it a go you can always come of it and try something else if it doesn’t suit.

I hope you will be as lucky as i have been ( by the way i am pre-menopausal too age 42)

Good Luck with whatever you decide and Take Care
Best Wishes
JanW

Hi I have been on Tamoxifen from Feb and have not put any weight on, I have been going to the gym and have managed to start to lose the weight I put on during chemo.

During chemo I had reflexology at the hopsital I was treated at and have continued to have a monthly session which I pay for in the community. I also take flax seeds (which I did before I was diagnosed) and I have since found out that they can help with hot flushes. I usually wake up hot about once a night but have tried to be positive about it because usually I am cold! ( I am the only person my husband knows who used to get dressed to go to bed - socks fleece etc and 2 quilts)!! LOL

I have also found that the gym has helped with energy level and I feel fab after I have been, well sort of! Yesterday I did 125 squats, so I can hardly walk to day but I know it is helping!

Good Luck
M

I’m 41 and premenopausal and I’ve been on Tamoxifen since January without any side effects. I’m overweight but that’s because I like my grub too much! I hope you get on ok with tamoxifen.

It is early days for me, as I have only been on it since the beginning of September, but I have been fine, apart from the odd night sweat. Don’t let the horror stories scare you. It effects some worse than others. If your Oncologist recommends it for you, give it a go. If you are one of the unlucky ones, you can always change brands, which seems to help some people or come off it later.

Love. Julie.

I’ve been taking Tamoxifen since last Wednesday. When the Oncologist ran through all the possible side effects and handed me the leaflet, I got home and it took me all evening to pluck up the courage to swallow the first pill. (I have a kind of phobia about taking new medication and even feel nervous if I have to take antibiotics as I have a lot of problems with them). Anyway, it’s been 7 days and so far so good. I have been waking up hot in the night but I am 52 and had already started this previous to the Tamoxifen. Can’t tell if it is any worse with the Tamoxifen. I supposed it is too early to tell whether I will put on weight but am only 8.5 stones so have room for a little bit I suppose. Just have to try and keep active. Once I’m back to work that shouldn’t be a problem though!

Sandra

I’ve been taking tamoxifen for the past 4 weeks and I’ve started with hot flushes (AKA Tropical Moments as my auntie likes to call hers) but they are not as bad as I thought they would be… sometimes it’s quite nice, especially if it’s been cold! I went out for a meal on Monday with my husband, and the table was made of marble - I must have looked a right sight rolling my face across the cold marble, but I didn’t care - it felt wonderful.

I’m a bit tubby anyway, so not sure if I’ve put any extra padding on yet. The alternative really isn’t an alternative, so I’d rather get a bit more padding and have some Tropical Moments, than have to deal with the cancer without Tamoxifen.

xxx

Tropical moments…I like that!

The only trouble with the ‘Tropical moments’ I appear to be having is that I have them whilst I’m asleep - when I wake up I’m lying on an iceberg in the Arctic!! - and NO I don’t have trouble with my bladder or a leaky waterbed!

Maddy xxxx

I am not sure but dont flax seed contain phytoestrogens? if you had a hormone receptive cancer you should check with your onc as mine told me not to take anything containing these as they can mimic the hormone.

I have been on Tamoxifen for 31/2 years and apart from the weight gain haven’t really had any other side effects. I was just glad that I was being offered medication to keep it at bay. I have seen many posts about the side-effects but we are all different. Look upon it as “an insurance policy” and the side effects are the cost. I have to say that I am more concerned about what is going to happen to me after the 5 years but I’ll cross that bridge when I come to it.

Hi,
I have been on Tamoxifen for 6 months and had no major side effects. In fact ive lost half a stone without trying! My partner says ive lost my bum!..hope it doesnt go back on again! But feels good to buy size 8…got leather trousers today…hope they really are coming back!..Only prob is hot flushes starting to waken me up at night, which is strange as its getting colder and ive never had heat on in bedroom. Im not sure if side effects increase/decrease with time on Tamoxifen.I havent had a period since 3rd Fec, so plan is to change me to Arimadex after 2 years on Tamoxifen, im 42.Its interesting how different we all are…I suppose ive lost a stone over last year since diagnosis, but im the type who cant eat whilst being stressed, although i had no nausea on chemo…

Jill

Been on Tamoxifen for several months now. Also on Zoladex (just had my third injection)
I feel hot every so often, but no real major hot flushes, thank goodness. Joints hurt quite a bit which is difficult cos I feel like an old woman in the mornings, especially. 46 going on 80!

The worst for me is the weight gain. I spoke to my GP who’s always supportive, and she’s going to get me an appointment with a dietician. Also she’s referring me to a gym that’s also a rehab, so I’ll have specially trained instructors showing me exercises I can do with my aching joints that will help me lose weight.

I’ll try anything that’ll help me feel better about myself…

Everyone is very different on Tamoxifen, so please try it.

love,
Jacki xx

Hi

started taking tamoxifen couple of weeks ago, and touch wood, so far so good !! I am 44 by the way, not seen any monthlies either (hope it stays that way too) !

My sister takes it also and she is absolutely fine, no side effects whatsoever (she is 54).

Diane x