I finished my chemo and radiotherapy on Thursday this week and am 2 days into Tamoxifen and have never been so paranoid about side effects in my life, just seem to be waiting around for something to happen, very unlike me. I have had hot flushes and night sweats since chemo, so am hoping I wont notice too many changes…wish me luck 
x Ps. love these forums great to feel normal!
I’ve been on Tamoxifen for two weeks now. I am post menopausal and when I queried this I was told it was because they did’nt want to give me the bone thinning AI’s.
I’ve been taking cod liver oil for years but I’ve definately felt more joint pain recently (mostly around my hips).
Mood swings? Yes but as I live on my own, manageable, can hold a good mood when family/friends visit, but I know that living with me would not be easy.
No hot flushes or night sweats yet but I have had lower abdominal pain. Anyone else had this? Is it a side effect or is something else going on? Don’t need painkillers, it’s not that bad.
foxyferret - yeah had the abdominal pain, also bloating. Not every day though and it eased off after a while. I’m off the tamoxifen now as about to start chemo. Will start up again when regime is done. But really not to worried about taking it for five years having found the S/Es to be fairly minimal.
Hi
finished active treatment in May and been on Tam ever since…whole raft of se’s…weight gain…flushes…night sweats… joint pain, especially hips…no fluid retention as yet, thank goodness but as I have said on another thread…I’ll take anything to reduce the risk of recurrence…I am actually looking forward to cooler weather…how sad is that!!!
I have been on tamoxifen for a year now and to start with the S/E did get me down but over time they have decreased and are much better now, although I still get them they are less persistnet - hot flushes, leg cramps, aching joints and very dry lady bits, The last time I saw the oncologist he said it would be an option to stop - I said I would rather not, there not that bad and I would never forgive myself if it came back.
Had my first post surgery mammogram a couple of weeks ago and just got the letter to say all is ok - Yeah!!!
Hi
didn’t like to mention the dry lady bits…too much information!!! Got my first check up with the surgeon on tuesday… bit apprehensive now…
Thanks Keyfeatures, that’s eased my mind as has the fact that it’s been better today. Will wait and see but have been scaring myself silly. Sometimes it’s good to live on my own, sometimes it’s not!
annew272 - Yeah!!! Don’t know when mine will be but am be looking foward to it and dreading it at the same time.
I don’t want to take this drug because of the more serious SE’s , I won’t list them I’m sure you’re all aware and every night I hesitate before I swallow it. However if my bc was to reccur I couldn’t cope with the thought that I might have prevented it.
hi
been on tamoxofen since mid june . get hot flushes but was getting them before i started so can cope with them . some aches and pains but think its just normal . but noticed today that my toenails are starting to discolour every one of them was wondering if anybody else has this problem .
Hi my mame is claire just sarted chemo.iam on tac dont know anything about these drugs can anybody help.xx
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Hi Michelle
I’m 2 years and 9 months into my tamoxifen regime and was premenaupausal when I started. I’m getting all the same side effects as you plus I am now the size of a house (size 12 when I started, size 18 now). I’ve been told throughout the treatment that tamoxifen doesn’t cause weight gain or cause joint pain - have you also been told this?
bwgicat
I have been on Tamoxifen since Feb 2011. The only side effects I’ve suffered from are the hot flushes, which have settled a little now and very achy hip joints at times. I take Cod Liver Oil every day which I hope keeps the aching joints at bay.
When I last saw my Onc in December I asked him about the weight gain & he said it hadn’t been proven that it was connected to the Tamoxifen. Personally, I think it is most definitely connected!
I have gained two dress sizes, with the weight mainly going onto my middle, and I have not changed anything that I was doing before diagnosis. On fact, I’m probably more active.
A friend of my husband told him that his wife gained weight on Tamoxifen but a year after finishing she is back to her pre-diagnosis weight. Guess I’m just going to have to put up with it for another three years!
Karen
I 'm post menopausal and I’ve been on tamoxifen four weeks now and have just come onto this site. What a relief to find that being confused, having aching knees and being tired is part of it. I thought it was just the hot flushes! I have been gaining weight but put that down to having a bad case of the munches! I can now forgive myself for being tired…and even being tearful (not normal for me at all) because I get over tired. Since I had both breasts off I have had no other treatment and thought that i would just have to heal! With no other side effects! Perhaps I can feel tired and confused without thinking I am being a total wimp! Thanks Daisy Do I have been having night leg cramps and will try the tonic water…perhaps a bit of gin in it help?!
Hi All
I have been taking Tamoxifen since the 7th September and so far don’t seem to be suffering too badly with the SE’s but since taking it, I have noticed that I have got the most awful acid indigestion. Does anybody else suffer with this and can link it to taking Tamoxifen?
Many Thanks
Natalie x
iv been taking tamoxifen for 4 weeks now the first 3 where fine no se apart from needing to wee a lot more than usual but the past 4 days my pelvis has been aching and was so bad this morn that iv been up since 4.30 saw my doc yesterday she said its just the se of the tamoxifen.
Hi ,
I am new to this but after looking for some answers came across this website. I have been taking tamoxifen since January 2010, I did get hot flushes and aching joints at the beginning but nothing that affected me to much, upto a few months ago se were fine, I was taking APS. Three months ago my brand was changed to teva, the hot flushes came with avengance and the joint pain recurred, then last month I was given another brand Generics with all the above se but also including indigestion. Is it just me, or does any one else think this could be the cause. I have asked for APS brand back but apparently not marketed anymore.
I’ve been taking the tamoxifen for 8 weeks now. My initial side effect was terrible nightmares which started the very first day I started taking it. These finally went away after about two weeks, thank goodness because they were so real and terrifying. My problem is that I’ve always been on a 28 day cycle and up until this week every thing was on schedule. but this month my period has showed up again after only 15 days. Last month I had a lot of pelvic pressure and it seems to be the same again just 15 days later. i thought maybe I had a UTI but last month and had it checked but it came back ok so I chalked it up to just one of those things. I’m undecided if I should just wait and see what next month brings or if I should call my doctor.
This forum is great! Ive been on Tomoxifen for the past 4 months and have suffered with terrible indigestion and wind (although I try and blame that on the dog where possible), I have also gained a lot of weight and generally feeling rough. However, I am also on Zolodex which is lethal and makes me feel rubbish, aching joints etc etc… I think we need to try and fight the afects of these drugs, drag ourselves out when we can, cut down o alcohol, cigs, and eat healthily where possible.
Thanks for sharing your stories and keep fighting x
I have been on Letrozole but had such bad side effects I have been switched to tamoxifen which I start tomoro. I have felt all that you describe, the guilt because everyone says I look so we’ll. the immobility of my arm several months after the mx which resulted in physio and finally a steroid injection for a frozen shoulder and like you a year since my mx I am incredibly lopsided and await surgery on the other side. I’ve had hours of counselling and I found hypnotherapy worked but finally succumbed to anti depressants. I’m pleased to say that my arm and shoulder are finally improving and I’m keeping everything crossed that the tamoxifen will be easier on my body. My advice would be to be kind to yourself. Take good care of yourself. Don’t feel guilty about anything because none of us on here asked for breast cancer and take your time to heal physically and mentally. Good luck.
Hi everyone! New to the website, and I am very happy that I found it! I am about to start Tamoxofin in two weeks and I am very scared and emotional because I don’t know what to expect! Please ladies help me ease my anxiety and let me know what to expect? I know that everyone is different but I don’t care! All i want to know is the most common side effects, and what can i do to make my life easier or get more prepared for it! Thank you in advance!