Hi there
Have been on the tamox for nearly five months now.
Since then, i have not slept for a full night, loo trips, flushes and general uncomfortableness all playing a part.
Who do i speak to about stopping taking the drug - oncologist/GP/BCN?
I would rather have quality of life and take my chances, rather than put up with this for the next five years (already had the chemo/surgery)
Thanks
Nasreen x
Hi Naz
I’ve been on tamox for 6 months and felt very much like you until about a month ago, I take it at night so i sleep through the worst of the side affects.
I’d think long & hard before making any rash decisions. I’ve read on other threads that they lessen as time goes on and i’ve definately found that to be the case.
Good luck
Stella XXX
Hi
Can I say a felt the same way as you hot flushes, up to the loo 3 and 4 times a night, wept at the least little thing etc… I had been on Tamoxifen for 6 months. My Onc told me that the symptoms could have been caused by the menopause, radiotherapy or the tamoxifen or a combination of them all. He said I could have a break from it for a month to see how I felt and in actual fact I don’t feel much difference so as from today I am going back on them and will just have to put up with it and hope that the side effects get better in time. I’ve decided I would rather have the shield of the tamoxifen than not have anything at all. It will be interesting to see how I feel in a months time.
Hi Naz,
I really sympathise with what you are going through. I had similar experiences with tamoxifen, and was amazed by how debilitating the combination of symptoms was. Unlike Swissy, I know that it was the tamoxifen at the root of my side effects, as when I stopped taking it things resolved very quickly. However, I should add that I stopped only because the tamoxifen had stopped working for me - I went straight on to femera instead but unfortunately still developed bone secondaries.
In your position I would speak to my oncologist for help and suport, but so long as the tamoxifen seems to be working I would persevere as long as possible. That is me though, looking back from where I am now: in the end it is your decision, and I wish you health and happiness whatever route you choose.
Best wishes,
Jx
This is a really major decision and I agree with the others that you need to talk it through with the Oncologist. Do you know if you are menopausal? I thought all my hot flushes, headaches etc were being caused by tamoxifen which I’ve been on for the past 10 months but then I had a blood test which showed I had become menopausal (I’m 46).
I went through a horrendous period of hot flushes but they aren’t quite so bad now. Personally I’d rather put up with the side effects than take my chances. Ultimately only you can decide but it’s such early days yet. You will still be recovering from treatment not just physically but emotionally too.
Elinda x
Thanks everyone, i value your thoughts and opinions.
I will speak to my doctor this week, as i have really had enough of the side effects, which are mainly the flushes and disturbed sleep.
Maybe he will be able to give me something for the flushes, although i am taking super strength evening primrose and vitamin E.
Nasreen x
I had 5 years of tamoxifen for a trial - I was so well I thought I was on th placebo. BUT I was taking a high dose of Prozac at the time which is sposed to be good for flushes etc - it maybe a bit drastic, but if it can keep you taking what may save your life, it might be worth thinking of something like that. Just a thought.
Nina
Nasreen - I don’t know how old you are but you are likely to get many of these symptoms when going through the menopause anyway. I came off HRT upon dx and started all the symptoms immediately, before I started taking Femara. If you are close to the menopause, wouldn’t it be worth putting up with the side effects, because you are likely to get them later, naturally?
I have been taking EPO for years and I don’t really get hot flushes, just get a bit too warm. As for the poor sleep, it seems to be better now the nights are not so warm and I don’t wake as many times. I have been on Femara since November. Maybe if you persevere a while longer, the sleep and flushes may improve. It takes a good while for the EPO to take effect.
Ann x
Hi I have been on tamoxifen for 2+ years,the flushes are not as bad now as when I first started,but I get terrible sweats through the day and night and never get a full nights sleep.I am 48 so will probably be going through the menopause anyway.I would never consider not taking tamoxifen but can understand why some do.Also I would be carefull re Prozac as I think this is supposed to interfere with tamoxifen.
Bet wishes Mel xx
Nasreen,
I know how you feel (I started a thread some while back asking about taking a break from tamoxifen).
But before you decide to stop taking it, discuss with your onc the risk, plus ask about remedies. There are various drugs you can try to lessen the hot flushes. I have been on tamoxifen nearly three years now, and find the flushes wax & wane over time. They were horendous again when I posted my earlier thread, and at times like that I get quite desperate, then they lessened for a while, now they seem to be on the rise again. It’s very frustrating. However, I continue to persevere with the drug as I want to live. Simple as that.
Hi Nasreen,
I know how you feel but wouldn’t stop taking it without speaking to your oncologist. See your Gp as they can prescribe things for you to help you sleep and for the hot flushes, thats what I did and its much more under control now,
Tessa x
Naz,
Can’t give you advice about Tamoxifen as unable to take it due to blood disorder however I was told that I could not take evening primrose as it mimics oestrogen which is what caused my cancer.
I expect you have checked if you can take it but if not please do.
K x
PS how’s the hair going. Mine is now an inch long but very white and grey !
hi Nazreen, I came off tamoxifen as I had bad side effects and decided to take my chances. If you would like to pm me, I would be glad to talk to you. If you talk to your oncologist they always try to keep you on drugs, that is what they are paid for. There are lots of women who do come off tamoxifen and refuse other hormone treatment. But they tend not to speak out on this site as they get shot down on flames!!
Best wishes
Leadie
Naz, it is your decision totally but I would recommend you discuss it with your onc.
I suspect I may be one of the ones that Leadie accuses of shooting her down…
Myself (and a few others) have not shot anyone down but gently reminded them that the treatment is for a reason. Not all treatments suit everybody but there are options. Unfortunately one of the options, if you stop taking your treatment is that your cancer could come back.
The worry, despair and anxiety that comes along with a secondary diagnosis makes some side effects feel like a walk in the park.
See your onc, explain how you feel and take advice. Wishing you all the best with your decision.
julie x
nerver mind I’m having a bad day…
Thank you everyone, you are certainly making me think long and hard.
I will go and see my GP this week to try and get something to help me sleep at least, then i may be able to tolerate it a bit better.
I suppose my thinking is, well had surgery, had chemo, that must be it, cancer hit hard on the head…maybe not, and tamox is needed to keep it at bay.
Kay, I have an inch and a half of hair, better than nothing i guess, bits of grey in the dark…
Leadie, i am going to pm you now.
Thanks again all.
kayh317 - Who told you that Evening Primrose Oil mimics oestrogen? My understanding is that it contains GLA but not phyto-oestrogens and is not oestrogenic. I looked into it when I was diagnosed.
There is another thread on here where this was discussed, with a post by one of the BCC staff:-
breastcancercare.org.uk/forum/does-eveening-primrose-oil-tablets-produce-oestrogen–p326634.html
Ann x
Hi…its been a while since i’ve been on here.
I took tamoxifen for 2 years, and have almost done a year on arimiwotzit (can never spell it, or pronounce it). Tamoxifen wasn’t a walk in the park…but in a nutshell, what is on this long road? There were times when I thought I can’t do this anymore, I want sleep, I want to stop aching, I want to stop doing an impression of niagra falls at the drop of a hat all the time, I want my life back!!
I had a good chat with my oncologist, consultant and nurse about it…the fact that none of them had breast cancer made me think…pah you dont know what your talking about, its not you taking the pills. But then I thought back to the day I was diagnosed, and what the consultant told me they would do. Initially, he said, give me 12 months of your life for the basic important treatment, and I will try and give you 10 years extra. So on thinking about it, a tablet, is a tablet, yes it’s a pain, yes its annoying, yes it continuously reminds you about whats going on…but it can buy you that extra bit of time. Sorry, if that sounds a bit soap boxy. End of the day, its your decision, and I fully respect that…but (I know theres always a but in there somewhere) the pills dont last forever.
Ann / Kay - I too was concerned about taking EPO - I’d taken it for years and then read in a thread on here that someone had been told not to. I asked my BCN and she said take it no problem, so I have - the link was interesting as it gives the ‘reasoning’ behind any possible differences in opinion, so thank you.
Nina
Hi NAZ,
I came off Tamoxifen in April this year after 5 months of horrible SEs. I did it with the full blessing of my onc as he put my pathology report into a computer program called Adjuvant Online and calculated that it only reduced my risk of mets by 0.6%. He told me that he would advise his wife to stop the drug if she had the same circumstances as me.
You need to have a completely honest and rational conversation with your onc. Tell him exactly what your SEs are and how they impact your life. Get him to calculate the risk and then you can make the decision. My prognosis was very good - grade 1 tumour, clean margins and no nodes involved. Your prognosis is different and you need to understand what the drug is doing to improve it. Then you can weigh up the benefits versus the risk.
Good luck and feel free to pm me if you would like to.
E x