Curious to know whether anyone has tried the “taking a break” tactic to deal with the side-effects and if so whether it worked. My consultant was fairly offhand about whether tamox was really necessary, so i delayed taking it at first but then panicked and decided i probably should. however i don’t feel well on it…the physical bits i can cope with, but i seem to be becoming steadily more and more depressed. plus the headaches, feeling like a barrage balloon, loss of appetite and sex drive (!)…yes, maybe it is all just the emotional impact of having cancer, but intuitively it feels “chemical” to me. my GP said that some people don’t like taking it because they don’t want to be reminded every day that they’ve had breast cancer…anyway i’m thinking of trying the “drug holiday” to see how i feel - any tips?
Hey Catkin
what do you mean by the drug holiday should that be drug free?? I would question suddenly not takin it, it may mess your body up.
However hun sayin that I HATE TAMOXIFEN. Oh how i hate it. I feel like this alien has taken over my body. I weigh 3 stoen more i sweat for England and stink and am so old , well i feel it and i have no energy. What is SEX???
I wont go abroad as i would just hate the hot weather. Hubby went to Rome a few weeks ago and it was 100degrees and he said queues were an hour and a half for the places of interest. Rather him than me.
Our 25th wedding anniversary in Oct am lookin for hols to the antartic no romance though
Sad old Liverbird xx
Liverbird and Catkin,
I’m strangely rather heartened by your complaints. I completed radiotherapy at the end of June having started Tamoxifen at the same time (following a lumpectomy and 6 cycles of FEC chemo.) I knew from my reading and this site that being back in the ‘normal’ world would be the difficult bit, but have been taken aback at how vulnerable I feel and how low. It’s as though the past 7 months have hit me all with one whacking wallop just when I should be recouping my equilibrium. However, your posts suggest that some of this might be the impact of tamoxifen. It’s a tough call and I do have sympathy with your struggles. I too feel elderly. The last two sentences of Liverbird’s first paragraph could describe me too. Ho hum - on we go but it’s tough girls isn’t it?
Keep on truckin’ TeacherJY
Hi girls - I totally sympathise and empathise with you. I absolutely hated Tamoxifen and stayed on it for 3.5 years but the permanent sweating, weight gain and general depression made me decide to stop as I reckoned quality of life was my choice and I had given it a fair run. And it worked for 17 years so my advice for what it is worth is stay on it if you possibly can. I did find exercise helped with the weight and depression plus a mega sense of humour over the flushes. I agree with you Liverbird, I gave up summer holidays and never went to the cinema, theatre or concerts. Am now wondering if I had stayed the 5 year course it would not have recurred in the same breast? Anyway am now on Arimidex and that is far far better than Tamoxifen but am postmenopausal.
Try to keep smiling and we will all win through. I send you all big hugs and good karma.
i’m new to tamoxifen, well, 12 days into it, feeling like awful now, night sweats, no sleep, dry vagina, wondering what else can happen next!!! only got diagnosed on the 6th of June, had three ops, and not even time for my poor body to recover and they put me on this stuff, does living in cancer hell ever get any better? and god knows, i’m on this for five years now, so guess it will be valium or prosac next!!
love
Alison
Alison - you body may well adapt to Tamoxifen - it is quite a shock to the sytem at first. I found Pro-Banthine (which you can get from your GP) helped enormously with the actual sweating - the only side effect was a dry mouth which chewing gum helped. Hope things improve and do let us know.
Hello Catkin,
Yes, I took a “Tamoxifen-free holiday”, and it definitely helped me. I took Tamoxifen for several months, and absolutely hated it (all the usual side effects). I tried various things prescribed for me (Venlafaxine and Megace) to try to help, but these didn’t make things any better. Then my consultant suggested stopping taking the Tamoxifen for a while. He told me it only made a 5% improvement in my prognosis, and left the decision up to me.
Anyway I stopped taking it, and within a couple of months was feeling so much brighter generally.
Then I developed a pain in my ribs, and my consultant sent me for a bone scan. Fortunately, the bone scan came back clear, but this “scare” really frightened me and made me re-think my decision to stop the Tamoxifen. So I discussed it with my consultant, who was more than happy for me to start taking it again. He actually said “You know, second time around, the side effects might be reduced”. And he was right!!! I’ve now been back on it for over 3 months, and I hardly get any hot flushes, and I feel much more well in myself than I ever did first time around!!
I know that we are all different, and I would never advise anybody to stop taking any drugs without checking with their GP or consultant. But I am just posting this to say that, Yes, the holiday from Tamoxifen did me good.
hm. i guess there is such a thing as quality of life. it’s very hard to come to terms with having trotted along to the Breast Clinic last year feeling absolutely fine, been handed a diagnosis of a life-threatening illness and had to have a huge operation, left feeling as if i’d been run over by a steamroller and then having to take something that makes me feel hellish and incurs risks of getting other things wrong with me. also, i think i need to know whether i feel hellish because of everything i’ve gone through, or whether it really is the drug. so i think i’ve more or less decided to “take a break”…i’ve been on it six months, so i’ll take a month or so off and see how i feel, then it will be time for my review appointment and i can discuss it with the consultant then!