Hi Everyone
I saw my oncologist last April who agreed that I could stay on Arimidex, I just wondered if anyone else had been on this drug for so long as I know that trials have stopped at 5 years, and my oncogist concurred that no-on really knows the long term side effects.
Is there anybody else out there??
Thanks Debbie x
Yeah, my mum has been on it and will be til late next year which will be 10 yrs on it. They were looking at taking her off it after 5 but I was then diagnosed so the team, some of whom treat me, recommended she stay on it. Apparently keeping people on it beyond the traditional 5 yrs may be beneficial.
I have been on it for 3 yrs now and will continue as long as it works, altho my situation is slightly different to Mum’s as I have bone mets and obviously am younger!
As Mum says, she’ll ‘happily’ take one little pill a day as long as it keeps any cancer at bay.
Liz
Hi Lancslass I will be coming off arimidex end of this month after 5 years. At the last check last month I was told ‘trials show that after 3 years it’s not conclusive, but after 5 years trials have shown arimidex to be very sucsessful’ … so for me it is stopped.I dunno, I think it depends who you speak to as to what opinion you get!
I was diagnosed in 2004. I took Tamoxifen for 2 years and have been taking Arimidex for 5. At my annual check with Onc recently, he has decided to keep me on Arimidex for the next 3 years as research is ongoing that it may be beneficial to complete 10 years of hormone therapy, particular in node-positive patients. His view is that if I stop taking it after 5 years (or 7 if you count the 2 years on Tamoxifen)and then 10 years becomes the standard treatment, it will be too late for me to start taking it again.
I am tolerating Arimidex at the moment, particularly as I have persuaded my GP to prescribe the original, having spent two months taking the generic version with increased and unpleasant side effects. My Onc was sympathetic when I told him about my problems with the generic version and said that lots of his patients had complained of the same thing. I have had two bone density scans since starting on Arimidex - the latest one showing slight Osteopenia. Hopefully, by having a calcium rich diet and doing weight-bearing exercise I will keep the condition of my bones stable as I don’t seem to be able to tolerate Alendronic Acid very well. At the end of the day, I have decided that I want some quality of life without side effects from taking too many drugs!!
Regards, Jo
Jo,
I have been prescribed Strontium instead of alendronic acid. Strontium ranelate (Protelos) is the version approved by NICE and the only downside is that it has aspartmane in it. I switch between that and strontium citrate capsules which I buy on the Internet as I dont like aspartmane at the best of times.
I take it daily and the only restrictions are not to take calcium supplements 2 hours either side of taking the strontium.
Hi Josie I noted with interest that you had requested ‘Arimidex’ from your GP. I myself after being on this brand for 5 years was prescribed ‘Anastrozole’ by another maker this time, I had already got stocks of the forementioned. I was annoyed but spoke to my GP who said that he would be happy if it was his wife as there was no difference?
I did rune to see what I was taking as I have been feeling sickly of late after taking my ‘fix’, but after checking I am still on Arimidex. What symptoms are you noting?
I think that we should do our own ‘trials’ on after 5 years, what does everyone think?
Debbie x
Hi Josie I noted with interest that you had requested ‘Arimidex’ from your GP. I myself after being on this brand for 5 years was prescribed ‘Anastrozole’ by another maker this time, I had already got stocks of the forementioned. I was annoyed but spoke to my GP who said that he would be happy if it was his wife as there was no difference?
I did rune to see what I was taking as I have been feeling sickly of late after taking my ‘fix’, but after checking I am still on Arimidex. What symptoms are you noting?
I think that we should do our own ‘trials’ on after 5 years, what does everyone think?
Debbie x
Debbie - there is a thread about being put on the generic anastrazole and the side effects some of us have had and the subsequent issues we have had to get the branded Arimidex from Astra Zeneca. I’ll bump it for you. It’s all down to the end of the licence for AZ being the sole makers.
Liz
Hi Debbie
During the couple of months when I was taking generic anastrazole, I experienced an increase in hot flushes, nausea, joint pain but worst of all I seemed to be walking round in a permanent “fog” - unable to concentrate and forgetful. After a week of going back to the original Arimidex, I began to feel more “normal”. It’s all down to cost at the end of the day and GPs are more or less duty bound to tell us “it’s exactly the same” when clearly it isn’t as why are so many of us suffering from more side effects on the generic version? The anastrazole content is maybe the same but it’s whatever is used to “bulk” the tablet which probably causes unpleasant side effects in some people.
Jo
Hi Girls
I have been on Arimidex now for 5 1/2 years and to be honest I am have that ‘fog’ like feeling more and more which is a concern. I am still using up my supplies of Arimidex so it cant be the new brand type that I have been prescribed. This must be something to do with the drug itself?
Just proved a point…pressed the wrong button. I am feeling a little ‘out of sorts’, keep having vaugue moments, short term memory probs, weight gain (could be the glass of vino), I just dont know any more, would this have happened anyway…just don’t know. At the moment I am juggeling 3 jobs, a large house and grown up children, today I got really weepy at work, I can cope with a lot then I feel the need to just ‘go’ and walk with my dogs to get away from pressure, which is something I used to thrive on…just don’t know?
just seen my cancer specialist in december. been on arimidex for 5yrs, he asked me if i’d be willing to stay on it for another 2yrs because trials are showing that its less chance of recurring after this time.
Hi everyone
I have been on arimidex for three years - when I saw my consultant
in late December he stated that I would be on for the full five years
(his words) so two to go then await to see what happens. Am on
arimidex not generic version - took generic for three weeks and was
a total mess pains most parts of the body - egs, arms, elbows.
etc.
take care everyone
Pat
Hi there,
I’ve been on Arimidex now for 7 years & my doctor can’t seem to give me an answer as to how long I should stay on it for. Luckily I don’t suffer any side effects from it at all. I also take Protelos & don’t have any trouble with that either. This sounds good but then I worry that if it doesn’t seem to be affecting me is it actually working???
lbx157
Sorry may I just jump in quickly with a question? Is Arimidex instead of Tamoxifen but only post menopause? I tried to read up on it on Wikipedia, but it says it can be used pre or post menopause, but it also says trials showed a much better result than with Tamoxifen. Is this in post menopausal women only then? I’m 42 and suppose to go on Tamoxifen sometime down the line (I’m at the beginning of my treatment plan having chemo just now, then MX then rads, but they said I need to take Tamoxifen for 5 years as ER positive)
Thanks,
Christine xx
Hi Christine
As far as I am aware Arimidex is for when you have gone through your menopause. I was put on Tamoxifen for a short while after chemo (age 46) then elected to have my ovaries out as I felt that for me that was the best choice then I went straight onto Arimidex which I have been happy with. I have heard that they like to give Tamoxifen (which was always gold standard treatment) then onto an inhibitor after you have gone through your change.
I am sure that some on the girls could advise you better?
Regards
Debbie x
Hi Christine,
Although Wikipedia says ‘significantly better results’ (although not in mortality), Arimidex is not necessarily better than Tamoxifen if you read a lot of studies.
Margaret
Thanks Debbie and Zeppa. But what happens when I take Tamoxifen for five years (all being well, I can’t be so optimistic to be honest) and then I’m 47 / 48, they stop it instead of moving onto Arimidex for example, because I’m not of that age?
I’m aslo HER2 +++, so I have to go onto Herceptin next month for one year. Does the Tamoxifen start after the Herceptin?
Christine
Hi Christine
It does take a while for you to get your head around the diagnoses, treatment, termonology and drug names, but your will get there!! 
My understanding is that Tamoxifen and the armatose inhibitors are used when someone is oestrogen positive, so perhaps you are Her 2 and oestrogen positive? Arimidex was given to me when I finished my chemo so I am sure that you will be given Tamoxifen soon, I dont think that it affects the Herceptin but you should ask your oncologist.
Dont be frightened of taking a pen and paper in with you and ask all the questions you want. If you are oestrogen + then you would go onto Arimedex or such like when you have gone through your change, because it works in a different way to Tamoxifen.
I too couldnt think about the next 5 years but here I am nearly 7 years on (touching lots of wood) and believe me when I say that time is a healer, just be very kind to yourself. :))
3network3 - the tamoxifen or anastrosole(Arimidex) starts along with the Herceptin as they work in different ways to prevent recurrence. This means that it’s hard to be sure which side-effects are due to which drug (until you finish the year of Herceptin).