My oncologist told me tamaxofen does cause weight increase as a se so not sure why people have been told otherwise! Ive done 7 years of examastane (Aromasin) and cant tolerate it anymore the ses have become so severe no QoL. Hes offered me a break and then if I want can switch to tamaxofen. He told me weight gain and hot flushes are se of this drug. Not keen and not sure its worth pursuing for the small percentage benefit I wil get from it. I feel Ive done my time!!
Thankyou for your post. Very interesting. I have stopped taking Letrizol because of the acute joint pain in my hands.......although not taking it now for 6 weeks , my hands are still so painful at night. i wake up every 2 hours with stiffness...its so frustrating. My consultant has put me on Tamoxifen, but after reading the common side effects...I just don't want to take anything. I cannot bear the idea of suffering any other side effect that stops me sleeping!! your info on cutting the dosage down is so helpful.... will give it a try. See what happens. Thanks again.
@TBG - welcome to the forum from me too. I agree with Jill’s wise advice. The only other thought I had was to ask whether you have tried different brands of Tamoxifen, or if you have been on the same one throughout and the symptoms have got worse while on the same one? I know from reading threads, and speaking to friends, that some people experience different side effects with different brands. Or your team might look at alternative drugs for you?
My very best wishes to you, and I do hope you get some answers. Evie xx
Hi welcome to the forum ! Are you not still under the care of the breast care team they will have more knowledge than your GP ? You should ask for a review if you are .Some have been advised to come off hormone meds for a short time to establish if symptoms are caused by the meds . If you are not under the team still ( most people are for 5 years ) ask GP to refer you back for advice .
I had to come off Tamoxifen because it caused concerning changes to my womb lining and this can be a side effect of Tamoxifen ,so you should definitely have further investigation if you have abdominal symptoms.
Hello - I am new to this forum but have come here in desperation to see if anyone else’s symptoms/ side effects of tamoxifen have worsened. I am just at 2yrs of taking it and feeling worse then ever: bloating pelvic and abdomen cramp back pain joint pain the list goes on! What is so frustrating is GP doesn’t seem to be able to tell me if this is due to tamoxifen or not so I spend my life panic stricken that it’s something else. But to answer your question yes the side effects have got worse!
i am having the exact same symptoms s as you. I am 44 years old, active and fit and have a very sketchy appetite. But when I do eat, I’m full quick and bloated.
the mood swings are awful and i too apologize all the time. In the beginning, I also had awful night sweats and took a break and that seemed to help. I feel like I barely deal with that anymore. Thank goodness. I also have a great deal of discharge most days. Some days nothing. And my menstral cycle is so irregular that it’s very annoying.
my oncologist assured me that it’s all normal on this drug and that as long as I can tolerate it, she’d like To see me on it. She even lowered me dose because it was causing too many endometrial polyps
no one here is alone. Be well.
I'm with you, I ache all over and have hot sweats (not that I ever stopped having them after menopause!) they are just a lot worse now.
If it carries on please get it checked out in case there’s something else going on for you .x
Thank you Jill.
Relieved in some way to read that my symptoms are typical of menopause. From what I recall, my mother never experienced such, although she had a full hysterectomy in her forties so perhaps that prevents any menopause?
I’m coming to the end of annual leave and will be back at work in September. Maybe the reinstating of usual routines and a busy work and home life will somewhat alleviate the symptoms. If they persist, despite the return to a typical daily routine, then I will most certainly contact my BCN.
It’s awful feeling like an old and decrepit lady. I sometimes feel like I’ve passed my prime and hope when I am taken off tamoxifen that my va va voom returns!
Hi Savyshopper , menopause certainly can cause all those things !! It’s not fun ☹️
There’s probably no way of knowing if Tamoxifen is to blame unless you had a short break from it - are you still under the breast care team / oncology could you request a phone call to discuss ? probably a good idea to get some advice as there’s always a possibility something else could be going on for you that’s not Tamoxifen related ?
Hope you feel better soon .x
Sorry to read you are having a challenging time at the minute. I hope you are feeling a little better today.
If you ever wished to chat to one of our team of breast care nurses, please remember you can reach us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). We are always happy to talk things through at your own pace.
Sending our warmest thoughts
I was diagnosed with Grade 2 IDC in February 2020, had lumpectomy to affected breast and therapeutic mammoplasty to unaffected breast to even me up (however, a 23mm area of DCIS was found in the unaffected breast so lucky coincidence there!).
At 2 week post surgery follow up (end of March 2020), I was put straight onto Tamoxifen. Initial side effects of nausea and ‘dead legs’ as well as aching heels where I struggled to walk to the bathroom in the morning! However, all of this took place at the start of Lockdown One and I fortunately didn’t gain the Covid Stone! I accepted the changes and side effects and they didn’t really impact on my life at all.
Lockdown 2 in January 2021 and I continued to work full time (Key Worker) and retained an active lifestyle.
However, since about June of this year, things have gone downhill. Side effects have worsened (I still take Tillomed and always have). I have pains in my lower back, across my right ribs, aching joints, especially right elbow, and my feet hurt. If I’ve been sitting for even a short time, it is painful to walk again and what with the back pain and joint pain, I struggle to walk and hobble around until my joints get lubricated I suppose.
But the dreaded weight gain. I think I’ve put on a stone and a half in three months. Waistbands were getting a bit tight and the balloon belly grew and grew so I braved stepping on the scales and was aghast at what it said!
So, with managing pretty much trouble free on Tamoxifen for 14 months, now into year 2 of it, and I’m struggling physically. Wondering if it’s the menopause too, perhaps - I am 52 - and the dreaded middle age spread has come in abundance.
Just wondering if there are any other ladies out there in the same circumstances and for whom being on Tamoxifen for longer has brought worse side effects.
Thanks for your post this is potentially helpful to me. I hope you are continuing to stay cancer free.
I was originally on Anastrazole but was scared by the thought of it ruining my bones. I asked my oncologist if I could go onto Tamoxifen, all was well at first but I found I was so tired, not sleeping due to hot sweats and getting aches and cramps at night in my feet and legs, also dry vagina together with recurring thrush. I also had vaginal bleeding and was subsequently checked out for uterine cancer which is a risk with Tamoxifen. This was the final straw so I decided to do some research as I was about to come off it altogether and take my chances. I typed in low dose tamoxifen into google and a YouTube video popped up. I was amazed at what I was watching. Professor Andrea De Censi has been using low dose Tamoxifen for over 15 years with great effect. I have been taking 5mg since I saw this video in November 2020 and I am so much better. I can tolerate the drug now and I now have very few side effects. I had a mammogram last week and have had the all clear for another year. I think the uk need to look closer at this drug as 20mg is quite clearly is too toxic for most women, 5mg is so much better.
I cut my 20mg into 4 by the way.
I hope this helps.
here is a link to one of prof Andreas YouTube video.
I have been on Tamoxofin for 7 months now and I was having awful night sweats until my doctor made me take a break. It seemed to reset my system and they are much much less now. However, I am still very moody, which I hate and apologize for all the time in advance. But the bloating and belly area is my BIG issue. I’m slim, 43, fit and active. I am getting this belly that I just don’t know how to handle. I’m also bloated all the time when I barely eat and fatigued all the time. You’re not alone and I was just wondering if you had found any relief.
I have been on tomoxifen for a short while all my fingers are so stiff and painfull the same with my back it is also making my bones in my feet hurt and it effects my eyes never had this before taking them and i have started to put weight on
So, I have been taken Tamoxifen for about 6 months and I am experiencing just about all the side effects. I am very restless, anxious, moody and the hot flashes are unbearable! The weight gain is rediculous as I didn't need to gain 1 more pound. I am taking herbal black cohosh and am still sweating like a whore in church! Any advice for me? I'm just not sure that I am gonna be able to conquer this but am so worried about stopping the treatment. I am just so miserable.
hello ladies i just wanted to ask if tamoxifen has effected there periods i had one period now its 35 days since i had the last one im 44 years old ,just interested if other people are haveing this im sure there is lots of you out there would be grateful for any replies ladies xxx little fairy
Sorry to hear what your partner has been through.
For most of us on Tamoxifen, mood swings really are not a problem & we have minimal or manageable side effects. It could also be that this was a problem before tamoxifen, but the emotional impact of having cancer & the treatment involved, can exacerbate these issues for all sorts of reasons.
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. xx
Hi there Worrier,
I would recommend you talk to your BC nurse about taking a short break to see if the Tamoxifen is causing some or all of yoursymptoms.
I had lots of side effects initially when I started on Tamoxifen this Feb (2017) - hot flushes, insomnia, acid reflux, constipation, aches and pains in my hips, legs and feet. Different brands of the drug made no noticeable difference. I was so fed up that I talked to the BC nurse to see if I could try stopping for a while, to check just what was the drug and what might just be after effects of all the surgery and chemotherapy. My oncologist agreed I could take a 2-4 week break. It was very revealing. The aches and pains turn out to be arthritis (which I am sure was triggered by the chemo), and I still had hot flushes (the menopause!) but the constipation and insomnia are definitely down to T. AND I realised that I felt actually happy again, probably for the first time since my diagnosis over a year ago. My oncologist agreed that what I would call my mild depression was probably down to the drug. And, of course, if you have a chemical making you feel low, you are going to be much less likely to cope well with all the other stuff. During my 'break', the aches and pains simply did not bother me as much.
You can check on the Predict website just how much potential benefit you will be getting from Tamoxifen. http://www.predict.nhs.uk/predict_v2.0.html . This helped me to decide that I would continue with it despite the miserable side effects. For some women, it may just not be worth it.
I've been on Dukoxatine (cymbalta) for a good while and it says don't take with the tamoxifen so seeing doc on tues to discuss it. hope it gets sorted as. Y hubby is reluctant for me to just not be on anything.
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
The other thing I would say, is I made the mistake of trying to soldier on, and thinking I would get through it if I just tried harder. We're so quick to blame ourselves instead of the horrible situation were in and the horrible drugs we have a to take.
So I hope you can get some help from your doctor,. We have enough to deal with already, and need any help we can get.
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.
ive been on my anti depressant a long while now but it said you can't take certain ones with the tamoxifen. Hoping doctor can give me some advice as I'm not feeling too cracky at the moment having just started the tamoxifen. Glad you got sorted with one to suit you and the meds. All the best, Sue
Flippin right extra psychological support for hormone treatment! Hopefully they'll cotton on to it soon, as I've moaned before on here that the NHS currently dump you out of the door (ok not everyone and not everywhere) leaving people to often deal with hardest part with no support.
helena, I think some of the 'comfort' about talking openly might come from the anonymity of a forum? Great it exists though, where else would you be able to discuss your inner most fears and bodily goings on ? Lol
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.
I've had an acid reflux problem for years but Tamoxifen is diffently making me sicker I believe.
I started taking it on the Dec. 6th, I take it at night so hopefully I would sleep through any nausea se. On day 3 I woke up (4:30am) with severe stomach cramps, vomiting, nausea, couldn't even hold water down, diarrhea and gas. During the next several hours I developed a pain and burning along my spine, not sure if it was caused by the vomiting or something else.
Called the doctor (around 8am) and her nurse said it was a stomach virus and COULDN'T be the medicine, but it was OK for me to skip tonight's dose. Around 1pm the vomiting stopped and so to the diarrhea (never heard of an 8 hour virus). I didn't take any meds all that day, was severly dehydrated, extremely tired and had a ragging headache (probably from dehydration). So on the Sat. 10th, I felt fine, noticed an intense craving for vegies (that I normaly hate to eat) and drank a lot to help rehydrate myself. Felt fine all day.
Its now Sunday morning, woke up at 4:30am with severe nausea creaping in. It was bad enough to wake me up. No cramps this time. Quickly took a Zofran for the nausea (helping some), but that spine ache and heat is back too just not as bad. Will see how the rest of the day goes and take my next dose tonight, will see if the symptoms return or worsen.
**special note: my husband who was with me all day on Friday nor his friend (we were on a 4 hour round trip in the same truck) got the "virus". Nor did my 8-year old son who refused to stop hugging and touching me (he knows hugs make mommy feel better) while I was actively sick, got the virus.
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.
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.
It always worries me giving my tamoxifen perspective, as it's so negative, as there's no doubt that it is an effective drug. I don't like to scare people and want to reiterate that MOST PEOPLE are totally fine with it, and find the few side effects completely manageable. However, just like any medication there are those who can't tolerate it, and it's the minority whose accounts are often read online.
I read both of your posts with great interest. My problem with tamoxifen was also related to a lack of multi disciplinary discussion, an oncologist who literally had no interest in discussing it ( just take it) . Even when I presented problems, and knowing my past medical history, I felt emotionally pressured and ...patronised....yep......I wish I could find my posts from a few months ago which mirror what you have said. When I was seriously Ill on tamoxifen, my GP wrote to my oncologist and got a reply from a LOCUM oncologist, who said it was absolutely ESSENTIAL I continued and to try evening primrose oil. Quite funny now looking back lol I have been unable to continue with tamoxifen, after a much more holistic and thoughtful oncologist spent time discussing things with me and WE reached a decision.
I know there is a problem with women taking tamoxifen, I know it probably drives the oncologists nuts, but why don't they therefore spend more time trying to assist with the side effects and discussing the implications of treatment? There is a massive lack of support for those who take the hormone treatments, they write the prescription and wash their hands of it to my mind. For me,that was the hardest part.....not the surgery, or RT, it was the hormone therapy that made me ill. There have been thread s on this on the forum before, despondent women who feel caught in a trap of not wanting or being able to cope with treatments, but their oncologists are disinterested. It's a problem, and maybe comes from the pressure on cancer units to meet targets and move everyone quickly along.
NCross, I admire your confidence!
I too found my oncologist incredibly patronising. I'd had some endometrial problems a couple of days after starting the Tamoxifen, and the gyne consultant said if I was starting out with problems they were likely to continue if I took it, so his advice was to stop it. I had a polyp and abnormal endometrial biopsied in a fairly grim procedure, as possibly cancerous or if abnormal hyperplasia, still requiring a hysterectomy.
So when I saw the oncologist, he told me the biopsies had come back clear, and was I going to carry on with the Tamoxifen or not? In pretty much that tone. So I said I would, and there was no more discussion.
The next day I saw my GP and mentioned that I was on Tamoxifen prescribed by the hospital, and he told me there had been a M D T meeting to discuss it a week before, and they'd decided to stop it.
So it turns out my consultant didn't bother to read my notes, should have told me the MDT decision, but anyway doesn't agree and thinks I should carry on taking it.
And no one has discussed any of this with me at any stage...
So I'm not inclined to think that the medical professionals know everything, I'm deeply unimpressed with the way my care has been managed. But the Tamoxifen risks and benefits must be very finely balanced if these professionals can't agree.
I did have a large high grade tumour, so aggressive but it's DCIS , so no spread beyond the ducts.
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.