Hi Gillian. I'd posted this on another thread but it applies here too.
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.
Gillian dont be scared about taking it. The side effects are really broad and there is no saying what yours maybe. I do know people who only have hot flushes and manage perfectly well on it. It just seems to send me potty! Maybe its because i was only 33 when i started tsking it.who knows.
I am glad I came across this post, I was told I would need to start to take tamoxifen for 5 years. After reading the SE's I am really worried about taking it. I know everyone is different but it does seem most have horrid SE's
If i take tamoxifen every day i have the most amazing rage issues and mood swings. I actually feel crazy on it and unhinged! I am a midwife, normally very level headed but on tamox i am a screaming banshee yelling at my kids for spilling juice....i cant live with myself. my husband said he would rather i didnt take it! my foggy brain i am positive is the MAIN reason i crashed my car recently!!
i now take it every other day and everyting is much more muted. The side effects are more bearable and i figure 50% cover is better than nothing.
I've been on it 2yrs. Nothing really improved psychologically but physically it did but i lost 2st and i bet that helped the aches.
I've just come across this thread and have read everything with great interest. I've been on tamoxifen for two and a bit years now. Like you I was terrified of taking it because of the side effects. I had a long chat with a BCC counsellor and my family and decided to go ahead.
It was several months before the hot flushes started but they were bearable. I had no mood swings or feelings of agression at all. I went on citaopram anti depressants because the cancer had realy affected me and I had stress issues in work. More recently I've had aches in my feet, ancles, wrists and hands. I was worried that maybe my bones were being affected as the ache seemed to be in the bones. I don't have an onc to discuss my concerns with. (I had a mastectomy with no node involvement so I was lucky not to have chemo or rads. However I miss not having a specialist to discuss my worries with.)I only see registrars at my annual clinic appt and they seemed unconcered. If it's a tamoxifen SE I won't mind.The hot flushes are now pretty horrendous but again it's something I can put up with.
In a long rambling way what I'm trying to say is that if I hadn't tried it I may never have known that I can actually tolerate the drug. Maybe you will to, if you give it a try. If not, then you can re evaluate your decision. However, you have to be totally happy with the decision you make. I'm not saying you should take it,just offering my experience for you to consider.
Good luck with whatever you decide to do.
You say that your body got used to the Tamoxifen after about six months - but what about the emotional/ mental side effects? Can you say how it's affecting your moods, etc, two years on?
While I'd rather not go through the physical stuff, I'd be prepared to for the sake of trying to keep the cancer at bay - but it's the extreme mood swings, mainly depression and aggression, that I'm really (really!) scared of.
I am using tamoxifen almost 2 years.At first I was like you, but after 6 month my body used to this drug. If you can to endure this medicine just try to continue. May be your body get used to this.
@Carly, great to hear you're doing better now, thanks for the update. Have you looked at some of the alternative ways to reduce your oestrogen levels without this wretched drug, exercise diet etc? I'm seeing my onco in a few weeks and I know he will be suggesting/recommending it yet again, good to have this thread to remind me how bad I felt (and I was lucky the bad stuff was only in my head, not in the joints and everywhere else that you others are suffering too) and why I chose to say No thanks.
Hi Queenie - I was wondering how you're doing now, two week into to your radiotherapy and still dealing/ struggling with the SEs of Tamoxifen? And what kind of emotional support are you getting for it all?
I was supposed to start taking it in February, but I just... haven't. There's obviously no way I can know if I'm doing the right thing for me, but reading about your experience and other women here, I'm still wavering on whether to start or not. Also, my situation is different, my cancer was low grade tubular and not genetic.
Anyway, I hope you're managing - and also with the rads.
Take care of yourself,
I had a really good chat with my macmillan nurse the other day and what has transpired is that there is a differance in brands - as my local chemist doesnt stock the same as the hospitals it has been decided that I will get my drugs direct from hospital - I have got SE so badly from APS ones - not sure if this will help at all but I do think Tamoxifen is a horrid drug anyway although it is saving lives ! I have been assured the SE will settle down and I have decided to give it 6 months - if there is still no improvement I will defo consider stopping them - I do believe I will lose all of my friends and hubby otherwise.
I understand 100% what you are going through - 2 months of taking them and last 4 sessions of rads boosters having completed 20.
Good luck and stay in touch.
hi, ive been taking tamoxifen for 4 weeks and the side effects are horrible, im suffering from Hot flushes (which is the easiest one to live with!!), indigestion, nausea, joint pains, dizziness, heart palpatations and extreme aggression which im usually the calm person in my household, im due to start 4 weeks of rads tomorrow and i hate feeling like this and even though i kmow this is to help prevent cancer recurrence i feel like im being punished for my family genetic make up, my kids will end up hating me and my partner eventually will too!!!!
I feel great! Back to the 'old' me pre-BC. My onc was great, and as she said - her job is to give me all the options available, guide and advise - but ultimately, its me that has to live my life - and with the extreme effects I was getting - it was no life.
I am well aware of the risk I am taking - but I have the backing of my OH, family AND medical team - so now only time will tell!
hi gardenparty, i tried taking tam every other day last month(just to see if it made a difference to se,s) nope, didnt have any effect.just the worst period pain i have ever had. ever! so its back to the daily 20mg for me! xx
Just thinking, instead of taakeing tamox every day, what if we were to take it every other day, would u think it would cut all side effects by half, am i in dream land. may be xxx
Just wanted to bring you up to date, I started Clonidine for SE of tami hot flushes last week and already I have no more hot flushes YEAH! finally something works, the hot flushes have a lot to answer for they are a real pain and made me depressed and self conscious now all gone, I did persevere on the tami been taking it since last year and initially was a raving loony, like you said firecracker my OH and friends told me I was a nightmare at the time I didn't see it, but they have since told me that I've settled down and calmed infact more chilled out than I was before all this cancer crap, my onc did say give it time and he was right.
Remember this is my personal experience of tamoxifen everybody's cancer is individual to themselves therefore we all react differently to the drugs, you might not have any SE at all or you could have different ones to the ones I've had.
Hope this helps
Love and light to you
I have red all of these posts with massive interest .... I have evry single side effect listed !!!! I am off work now half way through rads - 10 more to go and just basically feel like poo most of the time, my hubby is just about coping with me nd also even when I am exhausted I cant sleep !!!! My GP has told me to stick at it with the tamoxifen but I am considering stopping - all these SE within 2 months of starting - sure sign its the tablets that are doing it - I am also all puffed up and my cloths are tight !!!!!
Please everybody keep posting on this thread it really is a good informative one !
Love to all xxxx
Bit confused about the advice from NICE about not taking vitamin E, because that's what my onc's registrar told me to take for hot flushes. Anyone else been told to try that? Also, is vitamin E simply ineffective in which case the best I could hope for is a placebo effect, or could it actually be harmful like some of the other things on that list?
can i ask how many milligram tablets are people taking on tamoxifen. does everyone get put on same strength or does it vary???
Evening Ladies. A fortnight on Citalopram and I am feeling ever so slightly better but that could be because I am signed off work again so not doing a 70 mile round trip with all the stress that entails. But what interested me was that my ever so nice Doctor who checked on me today looked up Tamox on his medical database and could find no evidence that it causes depression. So he suggested being diagnosed with cancer had precipitated a reactive depression. Nope - i believe the extreme fatigue and numbness and disinterest is done to Tamox along with the hot flushes, night sweats, painful and heavy periods and aching joints. So I shall continue to blame Tamox (!) and continue to await Citalopram kicking in. In the meantime as long as I am signed off work I shall try to nap when fatigued but often no matter how fatigued I am, I cannot sleep. Hey ho. Love to you all xx
The BCC clinical team have suggested the BCC complementary therapies publication for further information ;
In particular the following :
The National Institute for Health and Clinical Excellence (NICE) is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. NICE does not recommend soy (isoflavones), red clover, black cohosh or vitamin E for the treatment of menopausal symptoms in women with breast cancer because the evidence on their effectiveness is limited and conflicting.
....and Carly, nearly a month, have you been able to tell your medical team yet that you've stopped taking everything? And how are you feeling physically and emotionally since then?
((((((((((((Moya)))))))))))) [that's a virtual hug, by the way!]
Well, thank YOU for the vote of confidence - sometimes I feel like I'm just complicating everything even more.
And like Carlie said earlier on in this thread, it's so good to know that none of us are alone with this dilemma.
Hey Choccie & Mel,
Thanks for your comments - yes, it is a hard decision to make, I can't tell if I'm just in denial about the whole thing or being responsible by not putting myself (and others!) through something I don't need.
I'm delaying making a firm decision until Easter, ie, after my six weeks of radiotherapy have finished and I've had a chance to recuperate my energy. I'm on Week 5 now, so not too long to go, gulp.
I had been thinking about going to a herbalist recommended by a friend - the herbalist specialises in hormonal treatment, which I thought might be a possible alternative to Tamoxifen (albeit much more expensive). BUT, from the posts I've read here, Tamoxifen's job isn't to manage the amount/ type of hormones, but to manage potential cancer cells and stop them hooking on to the hormone cells. Which I doubt many herbalists would claim to be able to do.
Then again, maybe I could start taking the Tam and use the herbalist as complimentary therapy to deal with any dodgy side-effects that might arise. ('Cos I just love spending money I haven't got!)
Do you know what my main fear is, though? It's that the SEs will take hold long before I notice them - as some women have said, it was their friends and family who had to tell them how radically their behaviour had changed. Now that scares me, not least as to how it could affect my young son if I get really depressed or go a bit crazy (sorry if that's offensive) and he has to deal with it.
And yes, I know, a lost-it-for-a-bit mum would be infinitely easier to deal with than a lost mum...
So why does all that scare me more than dying young, you might well ask? Good question.
Interesting thread ladies, I'm also on tami have been takin it now for 6 months, like Streesy I was in my early 40's (43) when dx (now 44) the chemo put me in early menopause and have been having wicked hot flushes ever since, tried anti-depressants but they did'nt agree with me so stopped them promptly. Thanks for posting the info explains things in an understandable way.
I find certain things trigger them for example if I drink a lot of tea or coffee basically caffeine then I get one after the other hot flushes, cut out the caffeine and they drop to around 10 episodes a day including bad sweats, also cooling my wrists with something cold like a ice cube or a piece of slate tends to stop them dead in there tracks.
Love and light to all
Breast cell estrgoen receptors are different to the Estrogen cells in the rest of the body, tamoxifen is a selective Estrogen receptor modulator, it blocks Estrogen effects in breast cells but can activate estrogen's effects in other parts of the body, it's thought to be bone and heart protective. You get hot flushes due to the Estrogen being blocked in the hypothalamus, which controls body temperature.
Hi firecracker.I don't know why some get really bad menopausal symptoms,maybe BCC have some information on this or you could ask your Oncologist.In my case I was told that chemo had probably thrown me into early menopause (45 at diagnosis)as my periods stopped on chemo and haven't returned and probably wont,I was told that this was common in women around this age.So in my case I think my symptoms are from the chemo induced menopause and not tamoxifen. I could be wrong though,but blooming hope not as don't fancy going through it all again when tamoxifen finishes lol.Good luck with your decision,it must be hard to make.I didn't question taking it as my cancer was 8/8 ER and 8/8 PR,also had vascular invasion and a node involved so wanted to make sure that any stray cells were got rid of (still no guaranties though, but nearly 5 years from diagnosis and all is ok,I think lol).
this is from "my breast".it explains it much better than I can.
"Tamoxifen is considered to be an oestrogen antagonist and therefore acts on oestrogen receptors in breast cancer to prevent cell function. There is also an effect on the pituitary gland that may result in an increased secretion of oestrogen in pre menopausal women. Tamoxifen does not stop your body making oestrogen, but instead has an effect on blocking any cancer cells that use circulating oestrogen.
Tamoxifen does not only act by blocking oestrogen receptors, and its anti-cancer function is also effected through other chemicals that are known to block stimulation or enhance inhibition of tumour growth. Tamoxifen reduces the level of cholesterol in the blood thus reducing the risk of heart disease and blockage of the arteries. It is also helpful in preventing osteoporosis, in post-menopausal women."
Hi this is from Macmillan on how tamoxifen works
"How it works Back to top
The way in which tamoxifen works is quite complicated and not yet fully understood. Its main function is as an anti-oestrogen drug.
Many breast cancers rely on the female sex hormone oestrogen to grow. Hormone-sensitive breast cancer cells have proteins called receptors that the sex hormones attach to. They are known as 'oestrogen-receptor positive' (ER-positive) breast cancers. When oestrogen comes into contact with the receptors, it fits into them and stimulates the cancer cells to divide so that the tumour grows.
Tamoxifen fits into the oestrogen receptor and blocks oestrogen from reaching the cancer cells. This means the cancer either grows more slowly or stops growing altogether"
here's a link to the page
Chocci...I'm not a medic either but the tam is like a square and fits the square hole in oestrogen in all cells...coz as far as we know we have no cancer cells lurking...and its just in case some develop it will block them....thats a very simplistic explanation but its late xx
FireCracker, would you consider starting it and then monitoring your side-effects?
Stressy, I was curious about your comment too. I understand what you're saying about the Tamoxifen blocking the oestrogen receptors in cancer cells, so does the Tamoxifen also block oestrogen receptors in normal cells in the body? That's kinda how I figured it worked - on all cells not just cancer cells - and that's what causes some of the oestrogen deprivation symptoms.
But of course I'm not medically trained so I could be way off the mark.
Hi Stressy - so if the body isn't producing less oestrogen, why does it react as if there was a sudden decrease, ie, with so many symptoms of the menopause?
This is a genuine question! I'm just trying to understand as much as possible in order to make my decision about whether or not to start taking Tamoxifen.
Hi Tamoxifen doesn't stop your body making oestrogen,hormone positive breast cancer cells have proteins called receptors and the tamoxifen fits into the receptors and stops the oestrogen from reaching the cancer cells.
Good points, Julie. But I think the SPEED with with our oestrogen is removed may have something to do with severity of symptoms for some. I liken it to having induced childbirth which is almost always more intense and painful than a labour that is allowed to progress at its own natural speed. But that's just my opinion and I could be way off the mark.
There is seemingly some evidence that some side effects show that AI's are working. AI's are aromatase inhibitors (letrozole etc).
However my opinion ( and it is only my opinion) that the difference in side effects is parallel to the different experiences we all would have with the menopause anyway.
The side effects that are problematic for some seem to be those that some women experience in the menopause ( mood swings, weight gain, joint pain etc). All consistent with the continuing loss of oestrogen.
Some of us undoubtedly had a tough time in adolescence, others not, some got severe pmt, morning sickness, whatever !!!
Maybe the side effects are signs that a treatment is working for some but others might not have them and it still be working. Am i making any sense at all ??
As I said previously, we are all individuals and react differently to drugs and treatments. Our cancers are all different too. Our oncologists are the ones with access to the information and treatments. Maybe when we all have access to oncotype testing our treatments will be increasingly targeted. Until that time we have to work with what we have.
Hithere, its great to see all the comments and know you are not alone in your thoughts, concerns etc. I was diagnosed with lobular bc last March, it had been there a while and was 6.5 cm when removed.!!!I also had full.axillary clearance with one node affected. I had the normal rounds of chemo,radiotherapy etc and began taking Tamoxifen last November. Felt fine for a month, the night sweats continued but they started during chemo, but what I'm suffering with is pain, discomfort with my bladder, and for the last few weeks a fluttering heart which is a tad worrying. I do need to see about it but just wondered if anyone else had similar symptoms? Thx X
I have read various posts on the forums where it was said that if anyone doesn't have side effects then the AIs/Tamoxifen isn't working. I was on Tamoxifen for 5 years and had no side effects apart from weight gain, does that mean it hasn't worked? Same goes for Letrozole, I have been taking it 3 years and apart from a problem with my mouth which may/maynot be a side effect of Letrozole, does that mean that it is not working. Do we now have to worry when we are not getting SEs?
I put this to my GP last week and he was horrified that Oncs were telling their patients this, was it just to pacify them when they complain about the SEs? Luckily I have an appointment with my Onc in April so I will run this past him.
Hi Firecracker, I guess that is pretty much what I was told too and as we are both tubular that probably isn't a surprise. I took the "I'll give it a go" line because I hadnt had chemo, rads is only localised and I had somewhat of a "what if they have missed some nasties" view and was told that tam would be a powerful weapon were that to be the case. Unlikely - I hasten to add as it wasn't in lymph - but then I looked at my teenagers and thought I would take anything going provided it didn't truly mess up my life.
We are each individuals, different circumstances, different bc and different degrees of SE. I can only reflect my own experience which has been that I have had only minimal SEs, wouldn't say my mood was affected or any major impacts.
If there had been, I might be saying something different now. As it is, I would happily take tam forever if it keeps me here and healthy for longer. That said, the other hormone reducing suggestions such as organic milk etc sound eminently sensible too xx
Hi ladies, I have been following this post since iv been taking tam since october, I'm 41. I suppose people would say I'm lucky as I don't seem to be getting any se, however this actually worries me because how do I know if its working? After being diagnosed last sept, I'm certainly a different person, I seem to cry at the least thing, I put that down to being worried about my future and my kids future, maybe its the tamoxifen? I personally was delighted to take tamoxifen especially when my bc was er+ 8/8, I asked my onc how do you know it actually works and she replied you don't?? I suppose time will tell. Karen x
Hi folks - what are AIs ? I've looked at the glossary and through some posts but I can't work out what it stands for.
Juliet - What AI side-effects are you referring to when you say they can be a sign that the drugs are working?
SO, I had The Meeting with the oncologist today, a very nice woman who stated that in her opinion any anti-cancer drug is great - as long as it doesn't mess up your life. Great, we're on the same wavelength, then.
However, she literally guffawed at my politely-expressed-but-earnest concern about possible depression and major mood-swings. She's in her late 50s, so it seems strange that she wouldn't have come across at least some such cases before now. Or maybe folk from round here just don't talk about that kind of thing...
Interestingly, she asked about any history of mental health issues in my family, as she felt it would only really be something to worry about if there was a history of it.
Anyway, her recommendation is that I take Tamoxifen for four months and see how it goes, and if I have any major problems she will take me off it, no fuss. I then asked what I would be prescribed in that case, and she said 'Nothing. There is no alternative drug for pre-menopausal hormone-receptive cancer patients.' Oh.
I then asked (smiling-but-earnest), 'OK, so what if I decide not to start taking it at all?' She replied pleasantly and matter-of-factly that I am the mistress of my own decisions.
So I'm feeling relieved that the she didn't have a go at me, and that clearly no-one can make me take the drug - but also rather weighed down by being the mistress of my own decisions. I look at my eight-year-old son and think maybe I'm just waaaaay off in my priorities - that an unhinged mum is better than a mum with a life-threatening disease. But then there's no guarantee that the cancer won't come back, whatever treatment I follow.
A major consideration is that my oldest sister (by 10 years) is currently having chemotherapy for the same cancer, diagnosed at the same time last year, operated on within two weeks of each other, but hers had spread to her sentinel gland. There is no other history in the family, nor for our other sisters.
What I've definitely decided though, is to wait until a couple weeks after the end of my radiotherapy treatment (so around mid-April) before I start taking the drugs - if indeed I decide to do so. I'm on Week 2, it's going fine, but I don't want to complicate the whole thing by mixing up possible side-effects.
I'll keep contributing to this thread though, it's brilliant.
I am with you stressy-messy. If some people are able to say that it is right to turn down proven, scientifically proved medical treatments. Then surely other people have the right to say that without the treatments some breast cancer sufferes will die.
As stated, your Oncologists job is to keep you alive !!! We are not saying at any price but there are options and alternatives.Not all treatments suit everybody. Speak to your Oncologist. Diet alone is not one of them. It can complement your treatment but is not a treament in itself.
With AI's in particular some symptoms are actually a sign that the treatment is working. Think carefully before you stop ( within reason).
Sorry if it is my post you are referring to lostinfrance.I didn't think I was telling people what they should or shouldn't do,sorry if it came across that way. As I said I was not having a go.it's got nothing to do with me if people do or don't take tamoxifen.it was just my feelings and we are all entitled to post them aren't we.
Sometimes you don't realise that what you are going through is a (possibly quite common) side effect, you think you are the only one feeling like this or you feel you're losing your mind. Well we are under stress after all, and life with cancer is not a picnic. And you can't get it into words and you feel stupid going to the docs and standing there bubbing like a stupid goldfish being unable to express it and bursting with frustration. It's good to know you are not alone and it's good to know there may be alternatives, different medication, different non-medical approaches to reducing oestrogen levels, and stuff like CBT to help with the muddle in your head. I've learnt so much from these boards from other women brave enough to share. They are big decisions we are dealing with and it certainly helps me to have people around who understand.
No one should ever tell another that they are wrong or right to take something or not....
Tamoxifen may well be a life saver to some but could be a life taker to others and a life messer upper to yet others. Its a very individual decision as to whether or not to take drugs and they ALL have side effects some hidden and some very apparent.
However we are intellegent beings and must sometimes take responsibility for our lives and happiness. To exist and be miserable is no substitute for living life to the full and being happy imho and if that means living a bit shorter life....so what, well no one should dictate.
I think the number of bc patients on anti ds is possibly a result of the drug treatments and their side effects. Sorry if this is a bit rambling....I find tamoxifen addles my poor brain!
Sorry you haven't been feeling great - sounds like tam isn't helping so hope this break will give you a lift.
Firecracker, I am also tubular, grade 1. I believe we talked on another thread. I was told that the prognosis is good anyway with tubular and that tam would give me an extra 1% on top of that. Onc was keen I took it, surgeon said "try it for a year, some people have no SEs, you may be one of them. If it has a major effect he would "listen" to me saying I didn't want to take it for 5 years." I've now taken it for a year. It gave me flushes for a while, my joints creak a bit and I'm pretty sure I don't sleep like I used to, but other than that it isn't doing anything major to my life so I will continue with it. I appreciate that it isn't for everyone though and just to say, if it had done anything extreme to me, I think with tubular in particular they might be persuaded if you feel strongly, although that said, tubular bc tends to be strongly hormone positive (I am 8/8 e+ and p+ so prefer the comfort blanket).