Has anyone started and stopped taking tamoxifen?

Cancer free at nearly 4 years, gave up Tamoifen after one year. Quality of life is important to me. 

Thank you,, the thing is with this time around after only a couple of days of taking it the pains and insomnia started. I did not sleep for three nights straight until I took a sleeping tablet, so I could probably get addicted to sleeping tablets or get run down and impossible to live with from lack of sleep. I am going to seek more advise from oncologist next week. 

@Pink 

Hi , I have a lot of problems with this drug.  Poor memory, word recall, sentences come out backwards, anxiety as well as the obligatory hot flushes and bone aches.  I've made several posts regarding the same type of thing if you want to have a look at them.

What I am doing at the moment is 3 months on and 3 weeks off.  I have found that each time I take a break the side effects take a bit longer to kick in and are a bit less severe. Luckily it leaves my system quickly and I can get my brain back together within a week, have a couple of weeks of normality and then start it again.
Obviously this is not an ideal situation but I ran it past my oncologist and he says it's better than not taking it at all, which is what was going to happen if I couldn't get it under control.  

I really find it difficult to decide whether or not it's worth continuing at times when there is no guarantee it's going to work.

@Pink, when I was diagnosed stage 3 in 2008 I tried Tamoxifen twice but it was hell. I felt just terrible. I decided with my oncologist not to continue. I was diagnosed stage 4 in 2016 and stayed on Femara for 18 months. That was also hell but started ok and built up to no quality of life. I've now changed to Aromasin and I am now starting to get the same side effects as Femara; arthritis, sweats, insomnia, dizzy - just feeling crap. I had a two week break from it and the symptoms went almost immediately but I'm trying it again on my oncologists advice. After 3 months, I've had enough of it but will try longer as it's Xeloda next and then I don't know what. It's such a hard decision but for me personally, quality of life comes first.

Thanks for that, yes feel damned if I do and damned if I don’t. I know what my quality of life was like last time, just terrible but persevered for the five years, still got a new primary in other breast, go figure

I did @Pink but I got talked back into taking Letrozole ( I am postmenopausal) .I'm thinking of stopping that now too due to the side effects. I had a very low estrogen reading and was HER2 Pos. It's such a dilemma! I always give the example of my mum who had a mastectomy at 43,(pretty sure was ER Pos)..... no chemo, no radio, no drugs........and is now 85! My docs say she was 'very lucky'. But I wonder ?? And just when I think I've made up my mind about stopping the Letrozole, I change it again?  :s Good luck with your decision,all the best, :smile:

@kezmusc

Hello I am looking for thoughts on my options again. Has anyone started on and stopped taking tamoxifen. With my first cancer I started on Arimidex, changed to Aromason and finished up on tamoxifen. It was five years of hell. Was off medication for almost three years and got breast cancer again in other breast. I thought I would go for bilateral mastectomy but specialist did not think it would be necessary. Now I am on tamoxifen and I hate it, it not only does my head in, the random pain, sweats and insomnia have already started and I have only been taking it for a very short time. I suffered awfully for the five years I was on it before and don’t want to go to that place again. Anyone else just stopped? Thanks