Extreme Side Effects of Tamoifen

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“nice to hear others have declined rads and stopped taking the drugs”!!!
this is CANCER we are talking about isn’t it?. sadly there is no “alternative” to tamoxifen or Al’s if there were we would all be advised to take it.Don’t get me wrong, i’m not having a go at those who are considering not taking tamoxifen or Al’s,thats a personal choice and I do sympathise with those suffering bad side effects,I know what thats like i’ve been suffering with them myself, but wouldn’t consider not taking my tamoxifen,but thats my choice.I know that quality of life is very important but I do sometimes think that people forget that cancer kills and for some of us taking these “drugs” is the difference between life and death.Don’t know how this post is going to come across and I hope it hasn’t offended,thats not what I intended.just was reading and found myself typing away my thoughts.

good health to all Melxx

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Mel, no offence taken at all. Yes, you’re right, Tamoxifen is a really hard-hitting drug that greatly increases our chances of survival. I wasn’t really considering stopping it, even temporarily, until my surgeon suggested it when I told her how I’ve been.

[[[Edited - maybe that was sharing a bit too much on a public forum.]]]

My surgeon did say that she’s had several of her ladies stop Tamoxifen for a couple of months in order to get themselves a bit more sorted, and they’ve gone back on it again without the bad effects, so I’m hopeful that’s what I’ll find. I certainly intend going back on it, because I value the good things it does.

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removed x

best wishes Melxx

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Hi CM,

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).

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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!

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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.

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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.

Melxx

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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).
julie

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Not critisising anyone…please don’t think I am as that was not the intended!

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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.
XO

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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

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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

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Hello

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.

Hazel

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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

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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.
JUlie x

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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.

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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.

Melxx

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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.

X

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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.

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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