Arimidex - 6 years

I have been on Arimidex for the past 5 years and have just reached my anniversary where I would possibly be taken off it. After speaking to my oncolgist a couple of weeks ago she explained that there was no up to date data about how effective this drug is after the 5 year period, but has agreed to let me stay on it until she has the results of my latest bone density scan. If the bone loss has got worse then I just don’t know what I will do.

Has anyone else experienced being taken off this drug?

Debbie xx

Hi Lancslass. I’m in a sort of similar position (posted on After Treatment)I’m coming up for a review and expect to be taken off Arimidex. I can’t find any research evidence anywhere to support staying on it but I’m really nervous about stopping. I’d like someone to tell us how we might feel when off hormone treatment altogether. Good luck!

I was taken off 5 years of anti hormonal treatment 3 months ago (2 years of tam and 3 years of arimidex). My bone density is fine. It has deteriorated a little during treatment, but as I was above normal level to start with and I have been taking cal/vit D pills all the way, it’s now average for my age.

I had lots of s.e on arimidex, but they are lessening .My joints are less painfull, my hair is slowly getting some body back, I seem to be able to concentrate more at work, I am very slowly losing weight ( a kilo per month) and I am feeling less depressed.

On the other hand, the fear of bc coming back is more present than ever. This is not being helped by the fact that I have lynphoedema in my arm and wear a sleeve and gauntlet on a daily basis. I also have MLE once a week. It never gives me the chance to put the cancer behind me.

I did ask my onc if a could stay on arimidex or change to another AI for a few more years, but was told that there is no evidence that being treated with AI for more than 5 yrs at this point of time will be beneficial for me. I will not be given Femara or Aromisin, as the docs will “save these” in case i will need them if I get a recurrance or mets.

I was on Tamoxifen for 5 years now on 3 years Femara which finishes next year and I don’t know what I will go on if anything next year.

There must be many ladies who were diagnosed before me that were put on 5 years of Tamoxifen and after that were not offered anything because there weren’t the drugs available to offer.

We are fortunate that trials have brought about more options for us to be offered.

Personally Tamoxifen did not affect me too much re side effects but Femara for me is becoming a long haul, not aching bones but hot flushes and sore dry mouth, that in some respects I am looking forward to next year but if I am offered another couple years on Femara would I say yes, I probably would, although the result of my my bone density scan might dictate what I do.

It is difficult but I always said that I would take what was offered me.