Tamoxifen - side effects - help!

Good afternoon ladies,
I have been on Tamoxifen since end of May (after my rads), was ok’ish for about 3 months but now feel dreadful most days. I’ve put on weight, have terrible migraine type headaches quite often (so much so my doctor sent me for a scan!) have terrible heartburn/nauseous feelings most days and just feel like shooting myself??? Can anyone suggest anything to try to combat these headaches, is there anything food or drink wise I should be stopping or starting - or do I just have to live with it for the next 4.1/2 years… I’m also having anxiety attacks now, because I haven’t enough to worry about!
I would be truly grateful for any help out there. I’ve tried ringing the helpline but can’t get through, always engaged, sadly.
Thanks in advance for your help.
Ladela x

I cant really offer you any advice ladela although i was going to post a similar question so if i could please just add one more thing on. I have really bad back and ribs and would like to know if there is anything that could stop these pains as is also making my life a bit of a misery?another 4 1/2 years of this and i think ill go insane!!!

Emily

Hi Ladela, so sorry to hear about the tablets, I was on tamoxifen for a month only and had terrible sleep problems, I could only stay asleep for 2 or 3 hours. The main thing though was severe depression, terrible anxiety, crying constantly in the mornings, being snappy and worked up about things. It’s strange that your symptoms appeared after a few months, but things do seem to affect people so very differently. Talk to your breast nurse and oncologist if you can. If you are post-menopausal there may be other options for you. I’m awaiting blood test now to see where I am in menopause so that I can be offered arimidex. Sometimes trying a different brand of tamoxifen can help I believe, although I wasn’t prepared to try it as too scared of the depression again!
Good luck,
Liz x

Thanks ladies for your answers, Liz I’m afraid I am pre-menopause to I think I will have to stick at the Tamoxifen. Emily I hope any further answers will be helpful also to you. I just feel one big wreck at the moment and I am sure my husband will be trading me in soon for a younger fitter model!!!

thanks again for replying.

Ladela. x

Hi Ladies,

I’ve had trouble taking tamoxifen, back ache, hip and knee joint pain for a month and nearly came off it. In fact my onc took me off it during radiotherapy as I could hardly move and that was only after 6wks. Then I had to go back on it.
Discussed with my GP and we changed the brand to nolvadex-d, this is still tamoxifen but I’m much better, still have slight aching back and hips but it is much improved and life is very liveable.
I speed walk twice a week in the hills and this keeps my joints loose!
Try and discuss it with your GP and see if you can get it changed. It has to be ordered nolvadex-d or you won’t get it.
I hope this is helpful.
Jo

Yep. I was just going to suggest you ask about nolvadex. It made such a difference to me too. Apparently it’s nothing to do with the drug itself, but the coating of the tablet or whatever they bind it with.

This is very common, but for some reason lots of people are not lucky enough to have a doctor who is on the ball about this. Makes me quite cross :frowning:

ASK!!!

Good luck

hi everyone

ive been on the tamoxifen for about 2 months now, and i am also a little low, and have put on even more weight ( although it may be due a little to some comfort eating). hot sweats are only occaisonally, so theyre not too bad.
but im also waking up more and having trouble getting to sleep, which is really unusual for me, i am at present on a low dose of anti-deppresant because of previous problems in this area, but i dont feel like coming off them while im going through all this other stuff, but will it get any better, i ask myself,

and will the weight stablise.( i really hope so) i dont think i will be able to cope without my goodies occasionally.

you feel like a treat when your going through this lot.

take care everyone, keep taking the pills, at least they should be prolonging our lifes, so thats got to be a bonus!

Hi Everyone
I have been on tamoxifen since July 2006 so well over 2 yrs now. I think with me i have gotten used to the side affects. Although i have had scans quite a few times currently awaiting bone scan results.
The weight gain is horrible but i decided that i would just accept myself as a size 18 and no longer a 14 and get used to it.I still have flushes but they are much much less frequent.
I swear by APS tamoxifen though. My doc was useless said he had never heard of nolvadex then i realised its expensive so gather thats why he has not heard of it. As he has been a GP for about30yrs i rather think he must have come across nolvadex.
I don’t know if you still have periods, my chemo finished mine off and i think that is probably what leads to mood swings, panic attacks and depression. Also don’t forget we now live with the shock of Dx and the fear of any re-occurrance. My big regret is not doing more exercise and if my bone scan is ok i am going to join a gym as a docs referral. I did go a few times but didnt keep it up.
Hope you get sorted soon Ladela, lets know how you are.

Rx

Hi Liverbird and anyone else

Did your symptoms reduce over time. I used to wake up in the night with hot flushes during chemo but has reduced now. I also used to wake up most mornings really warm and sweaty but that is reducing as well. I started taking tamoxifen in April this year. Is this normal?

thanks Pauline

Hi ladies,
thanks again for all your wonderful helpful comments. I will try and get my gp to change my brand of tamoxifen and see if that helps. I too have lots of digestion problems, I swallow heartburn tablets every day now!! Obviously this is also a big part of the side effects. Sorry I didn’t get back to you sooner ladies, but I have had a few bad migrains over the last couple of weeks so havent been on website, I think this must be a side effect too!! God I sound like a right moaner don’t I?!?!?
Just fed up with feeling ill most days. I try to get on with things but it gets to you sometimes. My gp offered me a anti-depresant but I am trying not to go down that road, I just want to feel normal again. I am now having another hot flush my poor husband has been cold all day as I can’t have heating on - just too hot!!

Thanks again everyone for your help and advice, it really does help and makes you think of things to ask GP or onc that you normally wouldn’t - thanks again.

Take care all of you, speak soon
love ladela xxx

Hi, I discussed the potential side effects with my onc before starting tamoxifen in September, and she specifically prescribed the Nolvadex-d. Whilst I seem to be a bit “tired and emotional” these days, and have the odd hot flush, I’m pretty much getting away with it side effect wise. Don’t tell anybody - but I’m actually LOSING weight - not a lot - just a few pounds - but unexpected! That AND no periods - it’s not all bad

Hope you all manage to resolve your tamoxifen issues and can continue to take it
love
Westie xx

Thanks Westie I will definately ask my GP the next time I speak to him to see if he can prescribe this particular brand of Tamoxifen, anything is worth a try!! And I can definately do with losing a few pounds - I too don’t have periods any more, at least that’s one good thing. . . . .

Love Ladela xx