Tamoxifen is hell on earth

Is anyone else finding this drug, hell on earth. I can’t even begin to explain the state I am in.

Physical side effects are not too bad, but its the mental ones. I feel like I am going to explode. One minute I am sobbing, next I am full or rage. I am drained mentally and physically. I phoned up the BCC helpline today and I was hsyterical and the lady was really kind, and told me I need to tell the hospital whats happening, so I am ringing the bcn tomorrow. Is anyone else finding this drug totally intolerable.

xx

Hi Stargazerlily

I have been on Tamox for about 18 months with the main side effect being a need for 2 hours kip in the afternoon. You sound you like you neeed to talk to someone.

Linky

I am going to ring the BCN tomorrow Linky and see what they say. I really dont know how I can keep taking this the way I am feeling. x

Hi SGL,

I would second the idea of speaking to someone. I have been taking tamoxifen for five months and luckily not much in the way of SEs but I would guess as its doing stuff to hormones it could well have extreme PMT like effects. Sorry, sending you hugs xx

hi, are you sure its the tamoxifen? You have been through so much lately. Not just the treatments but all the other stuff you have had to put up with, only to be topped with your husband out in the riots last week. Anyone suffering that lot could be having horrendous mood swings and anxiety. I hope the nurse you speak to today knows you well and what you have had to put up with.

Hi there

I don’t know what age you are but is it possible that you’re going into menopause, are in a chemo menopause or coming out of one? These can cause big hormone fluctuations which might be partly to blame. A simple blood test can determine that which is called a hormone profile - it checks oestrogen levels, follice stimulating hormone (FSH) and luteinising hormone and can be done in your GP surgery. Elinda x

Hi YES exactly the same no sleep moody violent etc. etc stopped taking it and now back to normal I am so very very happy. Sleep, placid sing and feel happy. I take my tamoxifen everyday and put it in a DRAWER! Sorry but true I follow Anti cancer new way of life book exercise changed diet and never felt so good. I am two weeks post RT Chemo and WLE and 3 weeks no Tomoxifen.

Love Jaspurr xxx

I too get ‘the rage’ as I call it. It’s horrendous, it’s like having permanent pmt. I don’t sleep very well generally due to hot flushes, aching body and small child so this may well add to my general irritability. Sometimes it’s worse than others and I keep meaning to write the symptoms down to see if they form any pattern but haven’t got around to it yet. I have been on tamoxifen for nearly two years and on the odd occasion that I see my oncologist she isn’t really interested in how it makes me feel. My mum just says that it’s the menopause and that’s what she went through, which is possible but she wasn’t 43 with a three year old daughter having to deal with it. Sometimes the rage takes such a hold that I feel like my head is going to explode so I just sob instead, sometimes I am aware that I am not a nice person anymore :frowning:

Sorry to moan but I do feel your pain (((((hugs))))))

Tamoxifen was one of the biggest breakthroughs in the fight against cancer - it made a huge difference to survival statistics.
I would urge anybody contemplating giving it up to think very long and hard before doing so, and discussing all the options with your doctors. Apart from anything else, it may well not be the tamoxifen, most people do not have such symptoms. Even if it is, there may be ways of coping, eg trying relaxation techniques.
Please don’t give up on it just for some perceived short term improvement in well-being!
Sarah

Thanks for your comments Sarah, despite the horrid s/e’s I have no intention of giving it up, I’ve got too much to live for. I live in hope that at some point the onc might put me onto something else although the alternatives come with their own problems.

I understand the temptation to stop taking it but I just can’t risk it with a three year old.

I am hoping that I will be having recon soon but have looked into the local yoga courses that I might be able to do afterwards as I tried it years ago and it was relaxing. I also realise that I may benefit from counselling but just can’t face it at the moment.

hi , i suffered exactly the same side effects, they were horrible, when i went back to see my onc, after being on tamoxifen for 2 months , and gaining 2 stones in weight as well as all the other things, temper tantrums, crying, sleeping and generally feeling crap, the onc said, ANGELA… you have put on 2 stone in as many months, how do you feel in yourself… i promptly burst in to hysterical sobs and said like this … all the bloody time… well when im awake anyway… he took me off them immediatly… and prescribed another drug that does exactly the same thing and today never felt so good… but dont just stop taking them … its not the thing to do… they are given to you for a reason… to stop your hormones working… there are other things … its not worth taking a risk by stopping them… angie x

Thank you for your post Angie, I am going to ring up my onocologist and see if maybe I can be have something different. What are you taking now. x

Thank you for your post Angie, I rang up the oncologists secretary and she has suggested that I get my doctor perscribe venlafaxine which is what they give to patients who are suffering terrible mood swings with Tamoxifen. She said when I come back to clinic they will see whats happening with the Tamoxifen. I will be having a break from it while on my chemo anyway.

StargazerLily, you have my every every sympathy and to the well-meaning poster (SarahAL?) who asked you to stop and think, because it is so good for reducing recurrences of ER+ tumours, 50%, which we do know as a proven fact, well I’m sorry but I feel she has no idea that in this state you CAN’T think, brain is all over the place. Extreme PMT is a very dangerous state and if you happen to act on that impulse to kill someone who pisses you off, you may get let off by the courts, that’s how serious it is. Diminished responsibility. You need help, urgently, preferably a change of drug, it’s not possible to live like that. That title “Hell on earth” is strong wording and I’m sure you didn’t choose it lightly, we are not talking about needing an afternoon nap and maybe a bit of touchy-feely back massage. Some people’s brains are just more sensitive than others to the chemical environment and yes the whole point of tamoxifen is to put you into menopause but it does it pretty much overnight not sliding in gently over several years as nature intended.

Hope that clarifies for others a bit of what it feels like to be losing your mind. It’s not a joke. It’s not a two-paracetamol headache. You can run away from me when I’m like this, but I can’t.

Schmooley, One thing in your favour as you look for help, is your child and the effect this treatment is having on her via your relationship, you may get more sympathy and action from her health visitor (access via GP or directly) than from the breast/oncology team who just think a healthy breast as their outcome and only look at the rest of you if the rest contains a secondary. Well it seems that way.

Angiem, I’m glad to know there is another drug available now, and would like to know more about it as I had to quit tamoxifen too for very similar reasons. Do you take it instead of the tamoxifen or as well as, is it anti-cancer or anti-freaking-out?

((((hugs to us all))))

Thanks Hymil, your post has summed it all up really well. I do get scared I could do something out of control. Then I tell myself to stop being silly, but your correct in that unlike the menopause, your body is literally thrown into this awful state over night. I have had a few well meaning friends telling me to be positive about the good its doing, etc.

Its nothing to do with being positive or not positive, is how your brain is reacting to this drug and there is nothing on hell you can do to stop that happening.

xx

The thing is that chemo can also put into an instant menopause. That’s why I get that checked first - if it isn’t that then it probably is the tamoxifen. There’s no reason why you couldn’t have something else to help with the mood swings if it’s the menopause or the tamoxifen.

Extreme PMT or any other extreme side effects really impact the quality of life. I think though that Sarah is saying it’s finding a way through with the help of your GP or Oncologist and not to just stop taking them as some people have hoping for the best without trying other options first.
Elinda x

SGL - like you haven’t had ENOUGH problems over the past few years :frowning: Really feel for you.

It’s horrible having your hormones tampered with in some way and not feeling like YOU. My OH has pooh poohed hormones to me, I told him, if you take away your testosterone and pump you full of Oestrogens you’ll find you don’t feel like the same person! You are a sum of your hormones as well as they control so much.

I have to say, I’m dreading taking it, I’m more scared of joint pains and mood swings than anything else. I had a lot of hot flushes with my periods due to very heavy periods and PCOS, I had a lot of pain, I’d wake up drenched etc.

But feeling lke ME has been removed is scary, I already feel very vulnerable having had/going through cancer. But the idea of having my hormones messed with for 5 years worries the hell out of me I have to admit.

BUT SGL - I have heard that people can have the mood swings for a while and then they do settle after either a few weeks or 2 months or so. I hope you have this sooner rather than later.

Perhaps it’s such a shock to your system but has chance to readjust or something - don’t this is a medical definition though :smiley:

Also, I’ve read that Tamoxifen can increase our chances of being disease free by a whole 40% - so that is definitely worth pause for thought.

xxx

Hi ELinda, I have not had chemo yet :frowning: I have that pleasure starting in September, so Its definitely down to the Tamoxifen I am afraid, as before I started them, I did get bad days, but thats what they were “days” but now I am just in a horrendous state all the time, and a not very great person to be around at the moment.

Thanks Kat, and you too have had your share of a SH** time too, so I know you totally understand where I am coming from. I am amazed at how much my hormones have been effected by this drug. My physical side effects are not too bad at all, I just get quite hot at times, but my head is just a total mess and I cant seem to snap out of it.

I phoned BCC helpine again today. (My phone should be on fast dial to them at the moment) lol Anyway they have suggested I try and get an urgent appointment this week to see the onc, so thats what I am trying to do.

You might be one of the lucky ones re the mood swings, not everyone gets them, fingers crossed you dont.

xx

Ah right, in that case it seems much more clear cut for you. I think an urgent appointment with the Onc is the right way to go. I hope it goes well and they can help you with this.
Elinda x

Tamoxifen is designed to block the oestrogen, and it does a good job in most women.

I had hormonally-related brain-slip twenty years back, so I wasn’t altogether surpised when me and tamoxifen didn’t get on. I had been warned to expected some similar crisis at menopause, but tamoxifen got there first.

In those intervening years I have learnt a few tools to control my life just a little, sometimes I remember to use them. At the time when I was prescribed tamoxifen, I was routinely doing decisions where I simply could not afford to make a mistake, and the raised risk of a recurrence is a calculated risk in that situation. I almost managed for four months, with lots of extra supervision, and yes it was totally horrible but I think I didn’t kill anyone. If I did, I don’t remember!

I was told that pregnancy and childbirth will cause ill health in whatever your weakest area, so if you have low glucose tolerance, the extra stress may tip you over into temporary diabetes, or if you’re only just cardiovascularly OK then your ankles wil swell when others don’t, or you will get varicose veins but they don’t, that the extra stress will show somewhere; and so I guess cancer and its treatment must put a similar stress to the body, some people will be more likely to get joint pain with a cetain drug than other taking the same drug, and some others of us more likely to lose it completely if our brain particularly needs those hormones.

Good luck!