statistics on side effects from Tamoxifen or Arimidex

I’m curious does anyone know of any good sources of info on how many people suffer what side effects from the hormone therapies.

I know a lot of people on here do, but I assume that a lot of people get on OK with them and/or aren’t on these forums so asking here won’t give me a good indicator of just what to expect when I start that pack of Nolvadex next week.

Dreading it a bit to be honest.

Hi vertangie,I’m going to be put on tanoxifen at some point soon and would also like to here from people about side effects.

Hi,

I have been on Tamoxafen and Zoladex for 6 months, Some people get side effects and other people arnt to bad! I personally suffer quite bad from the side effects, i am 23 and now feel like im 93, all my joints cease up, i have bad ribs and sometimes a bad back. I get full hot flushes, night sweats and mood swings! My BC nurse and doc think that i have side effects so bad because of my age, but I dont think that everybody gets side effects this bad.

When you do start on the tablets the ladies on here are very good and supportive as we all seem to go through the same thing! Like i say some people dont get them this bad so try not to worry, unfortunately tamoxafen seems to have a bit of a bad reputation, but its a certain lifesaver!!

Hope you both get on ok.

Emily

xx

I think the problem is, that like all things in life, people only tend to voice opinions when something is wrong. Or as a friend of mine puts it you don’t go back to M&S to tell them that the jumper is comfy and fits beautifully and you are very happy with it.

I have heard some absolute horrors about Arimidex - but personally I have had no problems at all.
The major side effects of Tamoxifen are blood clots and increased risk of endometrial cancer - the day to day problems are fairly standard menopausal symptoms like hot flushes and night sweats. I think some people complain of weight gain.
Arimidex can cause a lot of joint pain and some people have said it makes them feel 100 years old. Arimidex’s main side effect is that it can cause bone thinning and osteoporosis. I believe there is also a risk of elevated cholesterol.
I think that because everyone reacts so differently to hormone therapy that it is impossible to predict how you might feel.
I believe it is important to remember that, as unpleasant as menopausal side effects may be, they are an indication that the drug is doing exactly what it should.

Good luck.

Hi

I have been on Tamoxifen and Zoladex since last March. I do get a few flushes during the day and the odd night sweat but really nothing too bad. Think my husband would say Im extra moody, but guess thats allowed! Id rather have my flushes than periods!! Im 35.

HI ladies

I have been on Tamoxifen for 18months now and to be honest don’t really notice any change, I still have regular periods I do get hot flushes but very rarely and could be my age (47 just) I actually think my moods have got better but that could just be me perhaps we should ask OH or perhaps not.

Just take each day as it comes.

Bev

I have been on Tamoxifen for just over 5 months and to be honest it doesn’t agree with me. I suffer from horrific hot flushes and night sweats, (haven’t had a decent nights sleep for over a year really). Nausea and heartburn and I have put on 10lbs! I have leg pains on one side although that has been since I finished chemo. In fact I am pretty fed up most of the time and yet this time last year I was so optimistic. I am currently waiting for a scan on my neck as have had constant ache for about 3 months with no let up. Before all this happened I was never ill and never moaned about anything, now I feel like I never stop. My husband is brilliant, I feel he deserves better than me, he’s not ill, yet he has the burden of all this on his shoulders too. I am 45 yet feel 85 and was just starting to enjoy life now the kids have grown up. Life is now on hold indefinately!
Sorry about that whinge, I feel a little better for it.

I have been on Arimidex for only 5 weeks so far but am not aware of any of the side effects listed. But it could be it builds up. I am worried I have no side effects as from reading about Tamoxifen it is felt those who get hot flushes etc are benefitting the most! I too have heard horror stories about Arimidex.

Hi Angie,
I have been taking nolvadex-d (the expensive Tamoxifen) for 5 weeks and have no side effects at all and no hot flushes so far. Fingers still crossed but others tell me they start within a couple of days if you are going to get them. Nolvaldex tends not to cause a problem with sweats and joints.
Lots of luck
Lily x

Hi Vertangie

Have been taking Arimidex since November 2007 and apart from the odd ache and a few night sweats it has been fine. Nothing that unusual at all. I do have bone thinning but think it must have been happening before I started Arimidex as it was bad enough to need treatment as soon as they checked in about May 2008. So as far as I am concerned it was probably happening anyway so glad it was found! I am 56 by the way.

Too right that those with few problems with the drugs tend not to post and say so! That’s life.

Love and best wishes to all

Dilys
xxxxx

Hi there ladies
Lily - did you start off on Tamoxifen or were you prescribed Nolvadex straight away?
I have been on Tamoxifen since dx on 1st Dec and have had the odd hot flush and my periods have stopped I think (last one around 25th Nov). I’m 47 and pre menopausal.
My biggest SE is the nausea first thing in the morning about every 5 days.
This tends to be worse if I have a drink the night before - even just one white wine and soda !!!
I would like to be able to have a drink occasionally… but maybe I may need to give that up too :frowning:
I have my first app’t with onc on Friday to discuss my chemo treatment, do you think it’s worth mentioning?
Sorry about the moan
Hugs n strength to everyone
Sue x

I have just started on the IBIS 11 trial which means I am taking either Tamoxifen or Arimidex and after just two weeks I have had to stop them. I became depressed, grumpy and aggressive. Might try again but it has been suggsted that I start them every three days, then two, then alternate before taking every day.