hi Cookie, I also had anxieties before starting tamoxifen & sometimes reading too much on forums may not be reassuring as, understandably, posts with troublesome side effects tend to predominate over those where its not been an issue.
After over thinking things, I decided take my tamox in the morning after breakfast & take it from there. If side effects were a problem then I would deal with it as it arose.
I’ve made some lifestyle adjustments such as increasing activity levels & curtailing my wine habit a bit! So far my weight is stable & I have not noticed any increase in aches & pains over anything I had before.
As it turned out, I’ve been fine on it so far & agreed with the oncologist at my last appointment to stay on it, rather than go onto AIs. I also like the fact that tamox is better for bone & cardiovascular health
Hopefully all will be fine, but wait & see. If side effects are an issue then you will deal with it.
ann x
And most would say i drive them to drink… ?
Hiya, me neither! I’ve been on them for 16 months and have had nothing that bothers me , an odd flush and a bit more achy at times but really don’t have a problem with them, don’t worry yourself about it too much as you highly unlikely to get all of the side effects mentioned, try and focus on the job this little pill Is doing ?
I have never taken tamoxifen. I was prescribed it at the Marsden Hospital last October 2015. I found the whole appointment with the consultant really patronizing. He talked to me like I was an idiot. It really put me off taking the medication. I had decided that I would not take it anyway, however. He didn’t even ask me if I had any questions about it. He totally assumed I would do what he suggested. I had a mastectomy, had clear margins, no cancer in glands, and no aggressive cancer. I knew that the risk of it returning was very small and it was totally reasonable for me not to take tamoxifen. I really believe that we must make informed choices and not just queue up like sheep to take drugs and engage in procedures without either questioning doctors or looking at the bigger picture of how likely cancer return is. I also turned down radiotherapy as I did not want unnecessary further surgery, given the high likelihood. Had my prognosis been different, my choices may have been different, but for now, Tamoxifen is an unnecessary belt and braces treatment.
It was only when this issue came up, and I was told the two oncologists on the team disagree whether I should take it, that I realised I’ve never been told what benefit it is actually providing. It was a package, choose mastectomy or WLE+ radiotherapy+ Tamoxifen. So I don’t know how much of the benefit is down to the Tamoxifen, I think most is the radiotherapy.
Hi ladies, any advice for managing mood and bone tiredness on tamoxifen? Mentioned it to bc nurse who said come off it and go on letrazole. But I don’t want weak bones! Any advice? Much appreciated.
Leigh446, I had a lot of problems with mood swings and depression when I started Tamoxifen, I was having anxiety attacks where my heart was pounding and my legs were wobbly, alternating with horrible episodes of depression. The trouble is, we don’t start it at a time when things as going swimmingly in life, as a rule. So maybe my problems were down to the reaction to being diagnosed, two lots of disfiguring surgery and waiting to start radiotherapy. But it felt to me that it was the Tamoxifen, I’ve never been like that before.
In the end I went to my GP and have started taking an antidepressant, it was the only way I could carry on. I was worried about the issue of finding one you can take with Tamoxifen, but there are some that are okay.
I’m really glad I did, I’m so much better now. I’ll maybe try to come off in six month when things have settled down a bit.
I kind of feel that I should have managed better and not needed the antidepressants, but it was either that or give up the Tamoxifen, I couldn’t carry on the way I was, and I didn’t want to look back later and regret anything.
Sorry a bit of a tabo subject but i’ve been on tamoxifen for about 2 weeks now and have had awful constipation all of this time. Has anyone else had this as a side effect? Meds from doctor help but it is then back again. I’m drinking lots as currently having radio therapy (and diets ok).
hi dizzy,
I think you’re so right about timing & tamoxifen & we should not feel at all guilty about needing support in recovering from & maintaining treatment.
A bc diagnosis & all that goes with it, takes some adjusting to & interestingly, a study cited in the papers yesterday, highlighted the need for better psychological support for those needing hormone treatment.
good luck with it all
ann x
Thank you ladybowler, it’s indeed good to share. Yes I remember our dilemas of starting and generally fingers crossed not going to bad on the whole except this! I don’t think I can up my fluid anymore I’m drinking about 2 litres a day of just water ( plus x few cups of tea). Too many trips to the loo at nightime ha ha
Will persevere a little longer and see how I go…or not as the case may be 
Ps love your picture on another thread 
I know there are some which you shouldn’t take with Tamoxifen, although I don’t know if the advice has changed. My doctor was going to prescribe fluoxetine because I’d had it before and been fine on it. I told him I knew there was an issue with fluoxetine and Tamoxifen, and he said his computer system was letting him do it, and it shouldn’t if there’s a problem. But the NICE guidelines for breast cancer say they mustn’t be used together.
Anyway, I seem to be doing okay on mirtazapine, I feel like I’ve got my life back. I don’t know whether that’s the mirtazapine or because I’m in a spell where things are going okay for a bit. But I’m in the middle of rads, so it could have been a tricky time.
You should def not take Paroxetine or fluoxetine on Tamoxifen it affects how it works.
I take Venlafaxine which is the only one my surgeon would let me have with Tamoxifen, I was on Citalopram but he wanted me to switch, as Jill says Fluxetine is a definite Nono as it interferes with how tamoxifen works Xx
Hi everybody, I have been taking tamoxifen for about 5 months and each month I seem to get a new side effect! So far I have experienced weight gain, bloated feeling, hot moment (especially in my face), horrific mood swings, intense headaches (as a migraine sufferer these are becoming unbearable) and achey legs!
I would love to hear from any of you lovely ladies who maybe feeling the same way and if you.have any tips.
Thank you, it’s great to know there is a support group out there❤
Hi T , have you tried experimenting with different brands of Tamoxifen - some people find some a lot better than others when it comes to side effects .
Funnily enough my last prescription is a different brand so I’ll see how I get on with it. Thank you for your response!
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Have been on Tamoxifen just over six months, still struggling with side effects. Had reduced dose to one every other day for a couple of months and now back to one every day for about a week and I keep getting this low grade pain in my abdomen just below the ribs, that on top of aches and pains in joints, terrible migraine headaches, fluctuation in moods and itchy neck. Really wonder if I should stay on it for 5 years.
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Morning all!
Week 3 of tamoxifen and I have already learned a few things. My appetite has increased and I am having to really control the number of calories I have each day. I put on 3lbs just through eating more in the first 2 weeks, but have lost 1lb this last week by restricting my food intake.
The hot flushes are ok so long as I don’t have any alcohol, and I find coffee triggers them too so am down to 1 cup a day - I refuse to give up my morning coffee. I can’t function without it!
The only uncontrollable symptom is disturbed sleep, and horrendous nightmares. Anyone else getting these? I am waking 3 or 4 times a night which means I am tired by the morning. After about 4/5 days of this I get a good sleep because I am so tired I HAVE to sleep. I am going through radiotherapy at the moment too so I think my poor body is having to cope with an awful lot. So glad I opted to go sick and not attempt to work as well as having treatment.
On the whole, it is going ok with the tamoxifen - long may it continue, like at least 5 years!
Have a good day everyone. :cathappy: xx