Only just getting side effects

Hiya just wondering if anyone else who is on tamoxifen has had side effects flare up every now and then? Had them when I started in October then they calmed down. But now am getting them again painful joints, hot flushes, depression.
Am due to start zolodex as well soon and am a bit worried now I won’t be able to cope with the side effects
Xxx

hi butterfly83,

sorry the tamoxifen se’s have started again. i have only been on it for 6 weeks nearly so early days. i was talking to bcn other day though and she said it can take upto a year before things properly settle down and your body gets used to it.

can i ask how come you are also starting zoladax soon? has your onc advised you to?
hope you dont mind me asking. i have had consultation today about whether to go on this as well.
many thanks for any advice/info.

hope the tamoxifen se settle down.

TTM xxx

I have been on tamoxifen since August and the side effects have got better generally although they do seem to surprise me occasionally, like this week I have had some really bad hot flushes and I hadnt had any for a few months. I have decided to accept that I dont get it lol

Anne

Hi

Just been told I have got to take Tamoxifen for the next 5 years. I’m abit worried about the side effects it has. (I’m 42) any advice

Gillian xx

I think people are affected in varying degrees, I am 45 and generally I am ok, get tired but I dont know how much of this is tamoxifen and how much is just getting over treatment. The SE were worse at the start and got much better quite quickly - things arent perfect but I just remind myself how it is protecting me from a recurrence

Anne

Sorry to hear your side effects seem to be getting worse :o( After 6 months you’d hope the worst had settled wouldn’t you. I’ve only been on them since January and have got off relatively lightly side effect wise, so I’m hoping there are no nasty surprises in store as time ticks on.
For those who haven’t yet started the Tamoxifen, please keep an open mind. I was terrified of taking them after all the stuff I’d read about them, but so far I’ve been quite lucky. I hope I’m not counting my chickens too soon, but the only noticeable changes so far are mild flushes. Nothing unbearable at all.
Unfortunately, you don’t hear as many positive experiences as negative. I like to think that isn’t because there aren’t many positive experiences, but because those doing well on it are off enjoying their wonderful new lease of life after feeling better from chemo, radio, surgery and the like. I’m not trying to oversimplify things, just from my experience its better to assume nothing and go with the flow where possible. Some of us are lucky with the meds, but you can only know if you’ll be one of them once you’ve given them a go.
Good luck to those yet to start, and also to those suffering who are looking for alternatives. Hope your teams are able to help improve things for you.

Thanks for your replies.
Tom because of my age I’m 28/27 when diagnosed and I want to throw everything I can at it.
Went to ask my onc if I can go on it because I’d read that lots of younger women were being offered it as well as tamoxifen. I didn’t have chemo as they said the risks would outweigh the benefits so she said she was happy for me to go on it if I wanted to
Hope this helps xxx

Hi Butterfly

Just a thought, but has your brand of Tamoxifen been changed? I’ve not experienced this (only been on one brand and haven’t had any major side-effects), but I know that some women have reported that SEs are worse with some brands than others.

Good luck
Dx

Hi

I’m one of those who took Tamoxifen without having nasty SEs. When I started I had achey toe & thumb joints for just a couple of weeks then it settled down. Hope this reassures those about to start. I expect there’s lots who were fine on it & aren’t here posting. Unfortunately the forum can leave you leave you thinking that everyone suffers when in reality there are plenty who were ok & hence havent needed to come here for help.

Twinky x

Hi, i have been taking Tamoxifen since January and will be taking it for 5 years - i was really worried about taking it because of the possible side effects - there are a lot! The onc recommended taking it in case any cancer cells have travelled to other parts of the body (even though lymph clear) it makes sure the oestrogen cant feed them. So i decided to give it a go and if it was very debilitating i would come off them - there isnt much other choice apart from not taking them! The side effects ive had so far are hot flushes which are abating - initially i took my tablet before breakfast and used to get lots of flushing in the evening and at night, ive now started taking it last thing at night and flushes have improved so has my sleep!; Ive also got fuzzy head and tiredness; have had dizziness which lasted about a week; seem to be getting a lot of indigestion; periods have stopped completely and no PMT so thats a good side effect for me at 48! Good luck to anyone considering taking tamoxifen and i hope my experience has helped.

Hi I was on tomoxifen for five years. The first few months were bad mainly through night sweats stopping my sleep and severe hot flushes but this was not helped by coming off H R T at the same time as starting the tomoxifen. The night sweats settled but the flushes remained but at less frequency only other problems I had was in my 3rd to 5th year I found my joints becoming very stiff and I did incur a bit of weight gain. However today eighteen months after finishing my five years on tomoxifen and after 18 months of beginning on Femara all the stiffness and weight gain I saw while taking tomoxifen has gone. I do have joint pains and hot flushes on Femara so I do seem prone to the latter but like others when I first read up on the side effects of tomoxifen I was frighten to take it. Today I am glad I did!

I have been on tamoxifen over 4 1/2 years now. I find the hot flushes come and go in intensity. I have never been able to find any pattern to this, or any sort of trigger to the changes, it all seems very random

Hi,
I’m 6 months into Herceptin, but only 10 days of Tamoxifen. So far I’ve had a few ‘very hot’ moments, and possibly a bit more tired than normal, but that could be part of the herceptin.
I’ve been very lucky I think - so far at least - fingers crossed!

Hi All,
I’ve been taking Tamoxifen since December and the side effects have taken some getting used too, the hot flashes are the worst thing I spend most of the night throwing the covers off the bed but I also get freezing cold which I’m told is also the pills, I’ve also got really sore feet especially in the morning its so bad I can barely walk(anyone else found this). I did have injections whilst having chemo to stop the white count loss as I kept ending up in hospital with fevers so again not sure whether this caused it. The Drs don’t seem to sure so would be interested in any feed back on how to cope with it all as it all feels rather over welming at the moment.

Hi Ratty

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June, moderator