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I don't want to take tamoxifen! should I???

39 REPLIES 39
CheshireCheese
Member

Re: I don't want to take tamoxifen! should I???

Forgot to mention - the other side effect that a number of people get is aching or cramps in feet and lower legs at night. I had that for a while but found that I could stop it by doing exercises each day - stretching my calves, ankles and particularly the tendons on top of my feet.

sunflower16
Member

Re: I don't want to take tamoxifen! should I???

thanks all of you this really does make an interesting thread loads of information just brilliant

I am going to get my RADS out of the way then start on the drug and fingers crossed all will be well, must admit I'm not looking forward to taking that first tablet but I suppose once I have done it, it will become a habit. Things we have to do hey ladies??? it just ain't fair is it?!

CheshireCheese
Member

Re: I don't want to take tamoxifen! should I???

Hi Sunflower
I can understand your trepidation about taking tamoxifen, but as so many others have said - try it and see how you get on with it, it might just save your life! I'm another one who has had very few side effects - no weight gain (lost 1 1/2 stone since BC last year), hair if anything is thicker, no dryness. The only side effect that I do get is overheating at night and disturbed sleep, which at first I found was hell, but now I've either got used to it or it's not as bad as it was. Tamoxifen is such a life saver for those of us with hormone +ve cancers that it would have to be very severe SEs before I would consider not taking it.

Geraldine
Member

Re: I don't want to take tamoxifen! should I???

I will reach the end of my 5 years in Feb next year. I have had some side affects but I have found them manageable. I have not been depressed-why would I be? After chemo and rads, tamoxifen is easy. And not being dead is a big bonus. I have found that my hair thinned- not uncommon with the menopause which is what tamoxifen puts you through. I get more tired more easily than I used to however some of that is the longer term affects of my other treatment. I have n't had flushes- my nurse and acupuncturist told me that , as a vegetarian, I'd be unlikely to get them and they were right. My feet tend to ache first thing in the morning but I had some problems prior to cancer, probably a result of many years walking, backpacking,etc. Sometimes the fatigue has got me down, however it has all been manageable and for a long time, I had no symptoms. Try it and see how you get on. There are other options if tamoxifen does n't suit you. It's not terrible for everyone. I never liked taking meds but I now find myself having to take a daily tablet for high blood pressure- unavoidable as it runs in my family-and the potential side affects from that are staggering.

sarahlousie
Member

Re: I don't want to take tamoxifen! should I???

Hi I was the same "I don't want to take tamoxifen!" but finally after having surgery and leaving it for 3 weeks or so I decided that I had to throw everything available at this. I have developed all of the SE including severe hot flushes and sweats I am experiencing up to 3 an hour at the moment and I've been on it for about 2 and a half months now, cramping pain in my feet and joints, feeling low and depressed, you can take certain anti-depressants that will help with the hot flushes as well as the mood swings which I have gone to my GP to ask for he checked with my onc about prescribing me these and the advice was try taking fig leaf tea (cant find it anywhere to buy so am looking for fig trees at the moment which I can pick the leaves) failing that try changing tamoxifen which I dont want to do as its very effective and is a tried and tested drug it does work or to go on the anti-depressant which is what I am going to do once I've tried with the fig leaf tea, has anyone else heard of treating it with fig leaf tea?
Getting back to the thread its an individual decision but I think a wise one it could save your life.

Sending love and light
sarahlousie

queenie_from_d
Member

Re: I don't want to take tamoxifen! should I???

hello am on wk 3 of taking tamoxifen and so far so good(don`t want to jinx anything)SE are just very dry in the morning take mine afterfood around 6.30 am having night times sweats so didn`t want to add to them
feel a bit down but am going through rads at the moment traveling to and fro to the hospital is a pain my one biggest problem is NOT SLEEPINGbut will wait and see if it improves after the treatment has finished.will keep taking the tomxifen because simple it`s the best chance i have of it not coming back!!!!!!!!!!!!
hope this helps
good luck
queenie x

Osprey
Member

Re: I don't want to take tamoxifen! should I???

Thanks so much everyone - this has been really helpful.My SEs are settling after 6 mo I think...- I'm pretty sure drinking loads makes a big difference.
Good Luck all , hang in there!

Sandytoes
Member

Re: I don't want to take tamoxifen! should I???

Yay Sunflower! Good to hear you're going to give it a bash. When are you meant to start? I really, really hope you are pleasantly surprised with no or minimal SEs. You will find you again...probably a slightly different you...and maybe you might need some help if struggling, but don't feel bad or put pressure on yourself (or worry yourself unnecessarily like with the Tamoxifen! You will probably be fine!) - you've been through so much - both physically and mentally. Take care. X

smk
Member

Re: I don't want to take tamoxifen! should I???

Just to comment that I took tamoxifen for 5 years with no side effects at all.hope this helps.x

Zeppa
Member

Re: I don't want to take tamoxifen! should I???

Actually, I went to a talk about anti-hormone drugs a couple of months ago. I met a woman there whose side effects from Arimidex had been like mine but had gone away on their own while she went on taking it. Anyway, the professor said that if you were making a list of the best drugs of all time, Tamoxifen would be right up there with Aspirin.

Margaret

ChoccieMuffin
Member

Re: I don't want to take tamoxifen! should I???

Incidentally some people find that the different brands affect them differently so even if you do get side effects you might be able to fix them just by changing brand. the active ingredient is the same but the inactive ingredients can disagree with your body. +

sunflower16
Member

Re: I don't want to take tamoxifen! should I???

thank you all so much I am really overwhelmed by your views and support and for being so truthful. Just think I haven't been thinking clearly at all, if the 'old' me before this terrible time had replied to this post I would have said 'take it' I just feel I have lost 'me' along the way somewhere.

Going to give myself a slap and take them and deal with SE's if and when I get them.

thanks again x

pamela181
Member

Re: I don't want to take tamoxifen! should I???

I am hormone negative - if i had the chance I would take anything - go for it if you dont get on with it you can always make your decision at that point.

Good luck
xxx

Zeppa
Member

Re: I don't want to take tamoxifen! should I???

TeeCass, that's a terribly one-sided site and dates from 1998.

Of course there are side effects. But every treatment has side effects.

I agree with horsie5050: Haya, you must try Tamoxifen and see how you get on with it.

Leadie said she has no vascular involvement and feels fine. Well, I felt fine when I had BC, it was only the treatment that made me feel bad. But any of us can have a recurrence or a new cancer, even many years after treatment. I hope that Leadie continues fine, and statistically she probably will, but the problem is micro-metastases which can't be detected at the time of first treatment. Only if you have DCIS alone can you relax.

My experience is that I tried Tamoxifen and had massively swollen legs, which I thought came from it, but they were obviously after-effects of TAX chemo. Before they went away I changed to Arimidex (was 60 when I got cancer). The side effects of Arimidex were much worse for me. Aromatase inhibitors remove oestrogen throughout the body, whereas Tamoxifen has an oestrogen-like effect outside the breast/cancer cells, so it should not lead to osteoporosis. I went back to it. Lots of hot flushes have died down.

Originally I was keen to give up Tamoxifen and Arimidex because I thought they were ruining the rest of my life, and I will never know if I need Tamoxifen because I may be OK like Leadie, but personally I don't think the risk is worth taking.

About the 1998 article: of course you can have problems with cancer of the womb, but that's why I have a check-up every six months. The risk of thrombosis is increased - but it isn't all that great. I am interested in staying alive.

Margaret

TeeCass
Member

Re: I don't want to take tamoxifen! should I???

http://www.all-natural.com/tamox.html

PHEW thank goodness ive found you all, ive been fretting about this for a while. Please dont think of Leadie as irresponsible please have a read at what ive found and let me know what you think?
Thanks xx

Alice_Cliche
Member

Re: I don't want to take tamoxifen! should I???

I have the same "side effects" as Jennifer Saunders - but I'm not on tamoxifen. She may well just have the post - active treatment blues whioh are talked about elsewhere on this site.

I agree with the "positive" advice - yes read the leaflet, be aware that side effects are possible, but remember that on average the drug does more good than harm.

We are not a police state - and assuming you are NHS the drugs are free - so why not start taking it and maybe keep a diary - before you start jot down all the niggles that you have had over the past few weeks (off tamoxifen) - and then as time goes if you have any problems see how they compare.

Only you can decide, but from the outside looking in it seems a shame not to even try.

Good luck

Sue

horsie5050
Member

Re: I don't want to take tamoxifen! should I???

Haya, you must try it before you can make any decision about whether it us right for you. I have had very few side effects, just one/two hot flushes a day. That's it..if you have er+ bc and are pre-menopausal then Tamixifen is THE gold standard in stopping reaccurance.I think Leadie is being very irrisponsible in her response. If diet/wishful thinking & fairy dust were all it took,then none of us would be here.try it!xxx

Lemongrove
Member

Re: I don't want to take tamoxifen! should I???

Well here are the pro's and cons as I see them:
Taking Tamoxifen = possible unpleasant side effects.
Not taking Tamoxifen = possibly no consequences at all ... BUT if you happen to have a couple of stray cancer cells floating around your system there will be nothing to stop recurrence/progression/, and secondary cancer can ultimately kill.
If you're thinking that you can fight cancer by strengthening your immune system, maybe you should think again. My Oncologist (who is a Professor of Oncology, major research scientist, lecturer in Oncology and Harley Street consultant), explained to me that you can make your immune system as strong as you like, but it will still not stop cancer - because the immune system simply doesn't recognise cancer cells (and cancer cells manipulate the immune system anyway). He also explained the idea that everyone has cancer cells floating round all the time, and that the immune system constantly destroys them is simply wrong. The body does not have cancer cells floating round all the time, it has defective cells - the immune system destroys defective cells, but it does not destroy cancer cells (otherwise none of us would get cancer).
So if your immune system is no defense against cancer, and you don't want to take endocrine therapy, how are you going to protect yourself?

Nicky65
Member

Re: I don't want to take tamoxifen! should I???

Not everyone has side effects! I was mainly side effect free although I started to put on weight (not a massive amount I went from a size 14 to a 12), then decided to do something about it! I cut portion sizes (I love food, so couldn't give anything up entirely)then started to exercise, the exercise gave me a feeling of being in control of my life and did enhance it for a while. I entered sponsored races and walks and felt great and lost all my chemo/steroid weight + more (1 1/2 stone).

As Mrs blue said, talking as somebody with secondaries...I can't imagine why if people are recommended a drug that does save lives and decrease the risk of a recurrance/secondaries they would decide not to take it....Try it and see if the side effects are too bad there are alternatives,

Good Luck and I wish you a tolerable time on Tamoxifen - it is possible! xx

staycalmandcar
Member

Re: I don't want to take tamoxifen! should I???

Hello,

I'm going to be totally non-PC: Yes you should!

There are lots of people who have rotten SEs but equally lots of people who don't, the difference is that you don't hear from those who don't as they are happily carrying on as normal. I'm one of them.

I've been taking it since July and the SEs I can report are: occasional hot flushes...and that's it. No weight gain, no mood swings, no dryness, no tiredness, nothing.

I don't really understand why you would consider not taking it unless you completely abstain from all medicine. I take a pill to get rid of a temperature or other ailment, I've had chemicals poured into to me to blast cancer - all of these have associated risks but then so does just being alive! Take breathing for instance! - you very rarely take in complete pure air! And eating! - that's full of terrors, the potential of choking or even risking an allergic reaction, not to mention the danger associated with weight gain!!

So I would say - yes! Take it and if you get terrible SEs then stop.

x

mrsblue
Member

Re: I don't want to take tamoxifen! should I???

This is a general answer, not specifically for the one who asked the question.

If you have secondaries, YES (unless and until the side effects become intolerable). Same applies to Arimidex, letrozole or exemestane - these can be literally life-savers. Letrozole gave me good control of mets for almost three years.

If you have had treatment for primary bc and are recommended by your oncs to take tamoxifen or another hormonal therapy to reduce risk of recurrence, that is a very different situation. Be thankful that you don't have secondaries - as far as you know - and make your decision.

I'm posting this because people can sometimes be confused about these two scenarios.

Cackles
Member

Re: I don't want to take tamoxifen! should I???

Tamoxifen has been used for over thirty years and has extended countless lives. It is your decision whether to take it or not. However your team would not have offered it to you as a multidisciplinary recommendation if they did not think the benefits outweighed possible problems. If you do not take it you will not know if the side effects would be unbearable and if they are you could always stop it. if you have trouble in the future would you blame yourself for not having had something that was of possible benefit?
It might help you to ring the Helpline 0808 800 6000 and talk things over with them. I would take anything I could to keep this disease at bay ...but that is a personal opinion. If you read the side effects on a packet of paracetamol you would never touch them.
This is such a frightening disease as we all know and personal control is often taken away from us. Remember people with problems often make more noise than those that are doing well.... There are always more bad news stories in the media than positive.
I so hope you can make an informed decision soon.

dancing_girl
Member

Re: I don't want to take tamoxifen! should I???

Not posted for ages, but pop in and read sometimes.

I know how you feel. I am on Arimidex and put off taking it for a week after collecting my prescription. However it has caused minimal SEs for me. No difference in how I feel. I'd been having hot flushes and the other joys of getting older for years anyway, so it's obviously not helping to stop them. Joints are achier, but I'm back Scottish and Garland dancing. I was only 2/8 positive to oestrogen, but I still feel I want to do everything possible to keep cancer free. I already did lots of exercise and had quite a healthy diet and I still got an aggressive cancer.

It is quite possible that Jennifer's depression was the common 'end of active treatment' depression so it may or may not have been connected to the Tamoxifen. My advice would be the same as many others - try it and see how you are. If the SEs are too bad you can always stop or reduce the dose.
Best wishes with making the decision.

Stella x

Sandytoes
Member

Re: I don't want to take tamoxifen! should I???

But again, that's HER side effect. It doesn't mean you'll suffer from it. Some people would die if you gave them antibiotics (ok - an extreme example - but everyone reacts differently). At the Haven I met a woman who had suffered depression on Tamoxifen with suicidal thoughts but her doc just halved her dosage and said that would still give her some protection and she said she immediately felt better. I have suffered from depression and also get affected by PMT etc but Tamoxifen hasn't altered my mood at all. I feel fantastic at the moment. Finish rads next week, have had my chemo hair cut and dyed, will get my expanders pumped up the week after next and I'm ready for the Christmas parties!

If your main concern is about the side effects I wouldn't panic until you've tried it and seen what YOUR side effects are, if any. If you do get any unpleasant ones, then you can talk to your onc/GP and see if there's anything that can be done and if not, stop then. You could be like one of the many of us who have posted and feel absolutely fine.

sunflower16
Member

Re: I don't want to take tamoxifen! should I???

thanks so much for all your replies everyone has helped a lot, I have to nip out soon so will read them in full later, but just seen Jennifer Saunders on This Morning speaking out against Tamoxifen, so I googled it and found the article below, makes interesting reading, the jury is still out!

http://www.telegraph.co.uk/health/8936993/Jennifer-Saunders-speaks-about-her-depression-following-ca...

ChoccieMuffin
Member

Re: I don't want to take tamoxifen! should I???

Just to help you get a bit of perspective (guilty here of being first in the queue for getting things out of perspective) think about pills you would have little thought about taking.

Have you read the leaflet that accompanies ibuprofen for example? Scary stuff! Or paracetamol? If you read that leaflet you'd be terrified at taking it just for a simple headache.

A very good point help you get your own perspective on it all is to read the leaflet (thanks Louise) and maybe give the helpline a ring. They're a great bunch, and their sole purpose is to answer questions from people like you and me.

Nobody can make you take it, but Tamoxifen can have a massively positive effect on your chances of surviving this nasty, nasty disease.

jo-jo
Member

Re: I don't want to take tamoxifen! should I???

Hi Sunflower

i completely understand not wanting to take it. since my treatment i am so reluctant to take anymore drugs (even paracetamol) and would much prefer to take control of my life through diet and well-being.

However i don't know if this will be enough and i daren't risk not taking it if there is a possibility it can help prevention of recurrence so i have been since May 2011. I do suffer from hot flushes, night sweats but that's all and they have settled down a little.

When it comes down to it you DO have a choice, but just think very carefully before deciding.

Take care

Joanne xx

hazelmary
Member

Re: I don't want to take tamoxifen! should I???

Hello Sunflower,

Just wanted to add that I took Tamoxifen for 5 years and had very few side effects, main one being weight gain which has now gone. Everyone is different so please give it a go.

Unfortunately cannot say the same about Letrozole but thats another story!

Hazel

Louise_BCC
Member

Re: I don't want to take tamoxifen! should I???

Hi all

I thought you might find it helpful to read our factsheet on Tamoxifen so I've posted the link to it here:

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20

This publication can be either downloaded or ordered through the link.

Best wishes

Louise
Facilitator

DJ007
Member

Re: I don't want to take tamoxifen! should I???

I hate taking pills and potions and, before my 'lump' I hadn't seen my GP for 5 years! But, for me, tamoxifen was a no brainer.

I've been on it since 10th August and haven't even had a hot flush! I occasionally ache a bit in the mornings, but I am nearly 50 and do 'active' things, so that might explain it.

You may decide not to take it and not have any recurrance, you may take it and get one. Just make sure that you would be fine with not taking it and having a recurrance.

Good luck with your decision.
Dx

hjv123
Member

Re: I don't want to take tamoxifen! should I???

Im a bit wary of taking Tamoxifen but i agree with the others that u mostly only hear of the bad stories on here. My onc told me that it would make a 20% difference in recurrence risk in my case so for me it was a no brainer. Im ER+ 8. My chemo was only going to make a very small difference but i still had it as i wanted to throw everything i could at it.A friend of mine had Tamoxifen & said she had no SE's whatsoever. Its your decision at the end of the day but i would have another chat with your onc before u make a final decision not to take it. Good luck with whatever u decide to do.

SarahAL
Member

Re: I don't want to take tamoxifen! should I???

Tamoxifen was a huge breakthrough discovery that dramatically increased overall survival rates - and most women think any side effects are a small price to pay for maximising their chances of a full recovery. Of course you must take it. Unfortunately some (but very few) find the SEs to be very severe or difficult to deal with, in which case your oncologist will explore alternatives, but please don't be put off by the leaflet. for most of us the SEs are very mild.
al the best
Sarah

lostinfrance
Member

Re: I don't want to take tamoxifen! should I???

It is your body and your life and up to you to weigh up the risks! I don't agree that the only people posting on here are the ones with the problems! I am off getting on with my life and enjoying life etc however I, just like you, don't like the idea of taking stuff that interferes with my body....even though its my body going haywire that caused this in the first place!!

I don't think anyone can say they have no side effects, mild side effects may be or even ones that go unnoticed or are masked by something else, but when you were a person who was healthy, happy and never even took a paracetemol before diagnosis it can be very hard to come to terms with taking a drug that alters ones body.....and it does alter your body!

I have a 6% benefit from taking it and am going to review it every 6 months and if I feel it is causing a drop in my quality of life then I and I alone will decide whether or not to keep taking it. Its my life at the end of the day and its your life too. Good luck with your decision!

leadie
Member

Re: I don't want to take tamoxifen! should I???

Hi Sunflower,
I decided I did not want to take a drug for 5 years. I had a small tumour, no node or vascular spread, so my prognosis was good anyway.
I decided to look at my diet, change my lifestyle, balance my hormones through natural alternatives.
I'm in my 4th year now of ned and feel very fit and healthy.
It's your body and you need to feel what's right for you.
Best wishes
Leadie

gordok1
Member

Re: I don't want to take tamoxifen! should I???

Hi sunshine, I have been on tamoxifen since 27th oct, and I haven't really had any side effects. I was worried also but with a very er+ cancer then I have no choice. I asked my onc how do you know it works and she replied you don't!! However my breast surgeon told me my cancer was very er+ so of course it would work, please try it, karen xx

KittieKat
Member

Re: I don't want to take tamoxifen! should I???

If you have a hormone receptive cancer, hormonal treatments such as Tamoxifen or Letrazole are supposed to have a greater effect on survival rates than chemotherapy.

Why not try it and see how you get on?

crazy_cat_lady
Member

Re: I don't want to take tamoxifen! should I???

Hey sunflower,

Of course you should take it, I read all the SE's and like you had a mahoosive panic, especially the thinning hair, as my hair is already really fine, I have been taking the dreaded tamoxifen for just over a year, and the SE's I've had are - a raging thirst (this has eased a little) but I just carry a drink with me wherever I go, occasional and I mean maybe once a week maximum night sweats, a few bouts of thrush, and *touch wood, that's it, my mum says you shouldn't read the meds leaflets unless strange things start happening.

I know there are some ladies that are having a terrible time on tamoxifen, but that is why they are still regularly posting, (I only v.occasionally post these days) also, those that have had chemo, are probably still experiencing the after effects of that. There are probably twice as many ladies having no or very few SE's that don't post because they are trying to get back to 'normal', whatever that is.

I hope this helps, and remember, they have to tell you about ALL SE's same as they tell you, what COULD happen before your op/rads/chemo, it doesn't mean it WILL happen. I don't like taking it, but I see it as protection for the next 5yrs.

If you still feel you absolutely cannot take it, then you really need to discuss this with your bc team.

Good luck luvvie, get that prescription collected.

Take care x

Sandytoes
Member

Re: I don't want to take tamoxifen! should I???

Why don't you start taking it and see how you get on? We often see the worst of the treatments on here as we see feedback from those who are suffering. Those who aren't suffering don't tend to post on here so we get a very biased view. Of those people I know in real life, my aunt, a young woman I met on my chemo ward and another I met on the Young Women's Forum are all taking Tamoxifen and haven't had any side effects. I've been taking it for just over a month now and my hot flushes (which I think were from chemo rather than Tamoxifen) are really mild now - practically non-existant - and I get slight aches in the morning or when I've been sat in the same position for ages. Apart from that - nothing.

As with all drugs there are potential side effects and as with all drugs, you might not get any of them. Or you might get all of them!! But you'll never know unless you try.

It is an amazing drug that has saved thousands of lives. My prognosis is increased by 10% as a result of Tamoxifen - do you know the benefit to you? I would say give it a go and then if you do get side effects, then address the problem.

supertrouper
Member

Re: I don't want to take tamoxifen! should I???

My doctor had breast cancer several years ago and stopped taking Tamoxifen after two years because of all the side effects.

sunflower16
Member

I don't want to take tamoxifen! should I???

Looking for some advice and am happy to listen to anyone's views because I am really undecided about taking tamoxifen.
Been told I have to take the drug for 5 years I really struggle with this because I have looked at all the side effects and really wonder whether I should take it. Feels really wrong to be pumping my body with drugs that could cause sickness, pains, lady problems etc etc the list just goes on and on. I should have started taking them 2 weeks ago but as yet I haven't collected them. Is there any one out there who like me feels really nervous about the drug and refused to take it?

Of course there is another side of me that is saying if you don't take them the gremlin could come back!