What happens after Arimidex?

Hello all,
I wonder if anyone can advise me?
I have been taking Arimidex for nearly 5 years (in Feb 2011). I did take tamoxifen for the first 18 months when I was diagnosed in 2004, but developed a PE after recon surgery, so was changed to Arimidex.(had ovaries removed shortly after diagnosis, so was effectively menopausal-result ! A silver cloud …!!

Anyway, a bit of a rocky road later, and now I am wondering what is going to happen in Feb 2011 when my 5 years is up? I don’t know if I can cope with not taking anything- its like learning to walk without the use of crutches!
I really would appreciate any advice.
XXXX

Hi happyshopper!

I have been on Arimidex for nearly 3 and a half years now. When I saw my onc last November he said that there was a strong possibility that I could be on it for a further 5 years as research demonstrated that it could be beneficial. Apparently if your tumour was large, aggressive and with node involvement then strong case for staying on it, small tumour,low grade, no nodes then cease after the first 5 years.
I’m in the middle, medium size, high grade, no nodes so he said, on balance, I would stay on it, but depends on results of further research and how well my bones hold up ( osteopenia due to undiagnosed coeliac disease for 11 years!)
So I’ll wait til my first 5 years are up to find out what happens next!
Do you cope well with the arimidex?

Hi Happyshpper- like Birdy I am interested in how you have been, having taken Arimidex for 5 years already.

I have only been on it for 15 months but am not thrilled with it! My pre-existing arthritis has become markedly worse and the hot flushes are a real pain, particularly at night. I long for the never- disturbed nights that I once had ( was it only 2 years ago, pre BC?)

Birdy -your Onc’s. comments suggesting you continue Arimidex indefinitely are very interesting. I haven’t seen my onc for over a year but hope to see him in August when I will definitely raise this with him.
I am Grade 3 with node involvement so am ‘high risk’. I know we must be grateful for all the treatment but it does come at a high price, doesn’t it?

I was diagnosed in january this year and currently going through Chemo. I will have Rads too and I have been told i will go onto Arimidex for at least 7 years but that may increase as studies has shown that it is beneficial and helps keep it at bay. They will weigh up the health benefits v side effects at a later stage.

Seven years in a long time and who knows what else will be available or what new studies has found at that time. It does now seem that from initially trying to reduce the number of years you take hormone theropy there seemms currently to be a strong indication that the benefits to continue outway the risks/side effects.

I was diagnosed in July last year, had lumpectomy & node removal, followed by chemo & rads, currently on Herceptin for 1 year & Arimidex which they told me would be for 5 years. Watching this thread with interest as next app with onc is July.

WOW, thank you ladies for all your comments. I had no idea that there could be a possibility of staying on it for longer than the 5 year period.
Thing is, I haven’t seen the oncologist for about 5 years now- only ever seen by the breast surgical team. They don’t really seem to be able to tell me much really and that has probably made me feel a little concerned about things.
In fact, my last appt with them was a few months ago, when , laying on the couch, completely breastless for all to see(double mastectomy) the Registrar asks me if I am still having mammograms yearly(!). I looked at her, said something like “pardon me”, and she then asked again in all seriousness, for the unaffected side. I then had to say no, I have no breasts to do one on- I was horrified.I was laying there for her to see that I clarly had no breasts- she had just examined me.
I therefore feel very nervous about asking them what happens when I am due to finish it, and thats why I thought I’d ask for your advice, to see what you’ve all been told.

Topsymo- I know what you are saying re the side effects. yes, they have been pretty unpleasant but for me that has to be better than the alternative! I do suffer badly from joint and muscle pains, often to the point that I can bareley move. The fingers of both hands are swollen and I can’t get any rings on anymore.I have a tiredness that will come from nowhere and my memory is truly dreadful. It’s hard to know whether this is all due to the effect of having a huge lack of oestrogen, the arimidex, or a combination of both. Have to say, the hot flushes appear to have subsided almost, or I’m tolerating them better.Sleep is still not very good.
Hi Birdy,
you mentioned osteopenia. can I ask, do you have regular bone density scans?
I only ever had one, a baseline one, in 2005 when I had my overies removed and 8 months before I started arimidex. In fact, about 2 years later a DR casually mentioned to me that this scan was preostepenic, yet have said that I don’t need to have another one. I have not been put on calcium supplements either, just told to buy some from the chemist.
I am really looking forward to hearing more from you ladies.
XXXX

I have a diagnosis of osteopenia, had a bone density scan in Feb, & told it will be done again at 2 yearly intervals.

When i said only 41/2 years to go…
my surgeon told me he went to a conference last year where Paul Goss THE expert in USA was speaking “Breast cancer is a chronic disease”
and not to expect to finish after 5 years.

cme.medscape.com/viewarticle/465673

This link is an old article, there is a more modern one he gave me about conference last year but seem to have lost the link. Will add it later if i can.

Hi everyone, I don’t post very often, but I read the post most days, but thought I could add to this post. When I was diagnosed in January 2009 the consultant put me on Arimidex straight away, and he said I would be on them for life! I had a bit of a problem though because the first time I saw oncologist she asked what medication I was on. So because I am on quite a bit of medication because I have arthritis and Fibromyalgia my husband typed a list up to give her, and it had on it the Arimidex. Anyway when I saw The oncologist before I had my last chemo, I was saying about my aches and pains getting worse so I asked if it was the Arimidex. She then looked at me and said are you taking Arimidex now? so I said yes the consultant gave then me, so she then proceeded to tell me I shouldn’t have been taking them while I was having chemo!!! So really don’t know what to say. I am still taking Arimidex and I have to see my consultant next week for my six month check up, so I will ask him then I will let you all know what he says.
Heather

Hi Happyshopper!

I had a bone density scan when I started the Arimidex, I had one a year later and now have them every two years. I’m treated privately so I pay for them, but I think it is normal NHS treatment here to have them every two years.

My bone density has changed very little, it has declined slightly but my onc says this could be ‘operator error’ - they manually draw a line around your vertebrae and hip so depends how good their drawing is!!!

I was put on weekly Alendronic acid when i started the Arimidex and an Adcal D3 tablet daily. I do a couple of aerobics classes a week and an aqua class and try to fit in a walk of 5 miles or so a week. My knee joints in particular are not good although I have found that a lot of the early stiffness has gone - or maybe , after 3 years, I’m just used to it!

Hi everyone I said I would post after I had seen my consultant, well I saw her yesterday. I asked her how long would I be on a Arimidex and she said 5 years. She said there is no evidence that you get any benefit from Arimidex after 5 years.So I will just wait and see. I know I will be scared when they take me off it in case anything goes wrong. I think it is a bit of a safety net, I think while I am on Arimidex I am still having treatment and everything will be ok. I know that’s not how things work, and I understand I could have a secondary some where else in my body and the Arimidex wont stop that. But I think I just have to be more positive and tell myself I will be ok, easier said than done though :slight_smile:
Anyway Take Care
Heather

Hi all,

My mum had been on arimidex for almost 5 yrs, went for a checkup and was told she would be able to stop it at the 5yr mark but then had a call later to say they had discussed it at a meeting and they would prefer her to stay on it indefinitely as thoughts are that it can help. She’ll be coming up to 8 yrs in August.

We think the change in decision may have been partly due to the fact that a month beforehand, I had been diagnosed and am treated by the same team. I had chemo, mx and then tamoxifen before I was swopped to arimidex (with zoladex as I am still not menopausal) and am on the understanding I will stay on it as long as it works. I do have bone mets too but mum doesn’t.

DEXA scan for bone density every 2 yrs unless a problem crops up.

Liz

Hi, I have just stopped Arimidex after 5years of treatment.I should have stopped in April but as I had a supply of Arimidex I continued until last week. As I approached the end I felt lost and almost as vunerable as when I was diagnosed. This feeling came as a complete suprise to me as I have always felt quite strong. I rang BACUP (breast cancer charity) I asked ‘what happens now?’ They explained that the treatment acts as a ‘mop up’ for any cells left after surgery and if after surgery and radiotherapy total clearance had been given and there was no node involvement, the cells that were dependent on oestrogen will have died off. They explained that longer use of Arimdex can be effective in high grade tumours or for those with metastatic cancer but otherwise there is no benefit in taking it any longer than 5 years. I stopped taking it that day ( 4 days ago). I am still anxious.Does anyone know anything other than the above? My tumour was 98% oestrogen dependent, 5cm, without node involvement. I had a lumpectomy, followed by further wide excision and radiotherapy.thanks Lassie