I was diagnosed Jan 08 with 18mm grade3, stage 1 tumour, node negative, her2 negative, strongly hormone positive. After WLE had rads and now on tamoxifen. Will probably be switched to Femara later this year as my Onc is doing that with her post-menopausal ladies.
When I saw my Onc the first time she said women who get hot flushes on tam “tend to do well”. So I’m worried because in the 2 years I’ve been taking it I don’t get flushes – or if I do they are so mild and fleeting they don’t register. I would say that I never got any during the menopause either. Just a final period in May 06, then nothing.
Does this mean tam is not working for me? Has anyone else had this experience? I have my second post-op mammo on April 19 so this is very much on my mind and have got serious jitters as usual.
Hi Linda. I’ve only been on tamoxifen for 2 months and although I do get hot at night ( I have to kick the covers off) it still seems mild to me. Nothing during the day. Am seeing my onc in a couple of weeks so will ask her then.
Hi, I’m glad someone asked this question because that has worried me too. I’ve been on Tamoxifen for a month and have been expecting all sorts but so far - nothing! A bit warm at night but hey - I used to get that sometimes anyway. I did read somewhere that women who suffered the hot flushes had a better survival rate (some tiny percentage) and it meant that the Tamoxifen was working. Now don’t get me wrong - I am not complaining that I’m not getting any side effects but there is that nagging thought - is it working?
My onc tried to make me feel better about the SEs by telling me that there is empirical evidence that the drug is working most effectively in those that suffer the worst side effects. I have to say that I have scoured the internet and I can’t find any empirical evidence. Does anyone know of a clinical trial that has actually proved this?
I did read an article recently that said that scientists have discovered that Tamoxifen is ineffective in up to a third of the women who are prescribed it. This is related to a gene called FGFR1. You can read the article here or pasting the link into your browser if it doesn’t work automatically from here.
ladies - many thanks for responses. It is good to know I’m not the only one who does not get flushes, tho’ now you mention it, do tend to get a bit hot at night. Honestly can’t rememeber if I got hot at night pre BC - may well have done but hubby thinks I kick off the duvet more than I did!
elsk - looked at the link, interesting reading, as you say no mention of side effects. Astonished and worried to see tam does not work for a third of women!- at least so they say in the article. I know it doesn’t work for all but am sure I’ve read lower stats elsewhere in the past.
I have had a little thickening to the womb lining on tam so it appears to be doing something - just hope it’s also keeping the BC at bay.
There has been some research done and I have posted it up before but unfortunately can’t track it. All i can now find is this link from Cancer Research Uk which mentions there 2008 study under the ‘what side effects are’ heading.
The difficulty in searching for research is there is such a volume on side effects and tamoxifen. I’m not sure how reassuring or otherwise it is anyway so it’s probably best to have a chat with the Oncologist or surgeon about it all. I’m certainly going to when I see mine in a couple of weeks.
Not long finished chemo, about to start Rads for 25 sessions but I too am taking Tamoxifen but as I’ve been on it less than a week and so far - no side effects.
What has been reasurring for me is that my next door neighbour was on Tamoxifen for 6 years following dx for bc resulting in mastectomy, Rads and Tamoxifen and apart from a metally taste in her mouth she had no other side effects at all. That was 13 years ago and she was 47 at diagnosis. So far no signs of recurrence and she feels and indeed looks 50 instead of her 60 years of age.
I’ve opted for not worrying about the side effects and if the Tamoxifen is working or not partly based on my neighbours experience and outcome but also because as with any of the treatments for bc no one really can say if any of them work for sure. I’ve chosen to just get on with it and live my life as fully and stress/worry free as I possibly can.
not everybody gets side effects… hot flushes are experience by more than 1 in 10 women but that doesnt mean that all women suffer from them… in fact many women dont get any side effects at all.
also remember we all have different tolerance levels for things like pain, sensation, temperature, nausea etc.
i had very very few side effects from tamoxifen and its 4 years since i was first diagnosed.
side effects dont mean that a drug is or isnt working… for example there are a number of ladies here who experienced all the nasty side effects of chemo therapy but it didnt work and others who experienced very little side effects and it has worked remarkably well.
side effects have little to do with how much a treatment works and more to do with how well your body tolerates it.
i would just say enjoy the fact you are lucky enough to have little or no side effects rather than worrying about not having them.