Hi iam was diagnosed in 2001 the first time abd was on thomoxfin for 5 yers and I just got it agon on the other side, this time its a different type and very small theyare suggesting arimedezx for 5 years, I am 74 yers old and afraid of the side effects any info is appreciated.
I went to see the oncologist for my last appointment and he has advised me to continue taking Anastrozole for 10 years instead of the 5 years that they originally, this was due to research they had done. I am one of the lucky ones that dont get to many side effects so I am going to continue. I can understand ladies not wanting to do this with all the side effects that affect you.
I have taken Arimidex for 10 years and have not had a recurrence. My oncologist wants me to discontinue it as they have no information on taking it longer. I have not had side effects except for low libido. I want to stop it but am also afraid. However, I know that it weakens bones and since I am almost 70 years old, I do not want to die after having a fractured hip. Would like to know the percentage of women who have stopped it after 10 years that have had a recurrence. No one seems to be able to tell you that.
I do not think that continuing Arimidex after 5 years is straight forward because aromatase inhibitors are relatively new and researchers have not yet completed the clinical trials to find out what the optimum length of treatment will be or the potential (but unknown) benefits/risks of staying on an AI for longer than five years.
As I understand it, there may be some small benefit in continuing on an AI for more than five years, but there are also long-term downsides of prolonged suppression of estrogen levels including osteoporosis and potential heart problems.
If I get to 5 years I shall certainly consider taking Aromasin for longer, despite side effects.
From the explanation given by my onc, I understand that - while one is taking aromatase inhibitors, the production of aromatase (and therefore of oestrogen) is stopped, but once one stops taking AI's, aromatase is produced again with the accompanying risks of a recurrence/ secondaries.
Not an easy choice.
Best wishes everyone. Anthi x
Since I last posted about staying on Arimidex over 5 years, I reached a low point feeling very tired and have decided to come off it to see if there's any improvement. I wonder if 5 years is actually as much as a body can take.
My mum had been on this for almost 5 years when I was diagnosed in July 07. At her next checkup, they were going to stop at the 5 yr mark but because of my diagnosis, the consultants decided to keep her on it indefinitely. She's still on it now and is on yearly checks with NED. Unfortunately I had bone mets from the start but after chemo, mx, anc and rads I too started taking it alongside Zoladex jabs. I am on zometa as my bone strengthening drug too for the mets. I'm 45 and mum is 75 and we are both happy to keep taking it as long as it works in spite of the side effects.
I've been on Arimidex for 5 years and a month due to an oversight by the hospital and I'm not due to see them again until May. Apart from stiff joints and mild osteoporosis, the other side effects have cleared up, but I wonder if this is because the drug is becoming less effective. Has anyone actually read any research on whether taking it for more than 5 years is worth it?
I'd be interested to have your comments and also to hear from anyone who has taken it for more than 5 years for whatever reason.
Couldn't help but take an interest in this thread. I have had secondary in my neck...started on arimdex and then changed to aromasin (because of side effects). I was lead to believe that i will be on this drug for 10 years maybe longer to stop the cancer coming back. Maybe i miss understood but i am sure i didn't. I have got the start of osteoporosis but i was warned that they may happen.
Is there any research into the long term effects of these drugs/and do they outweigh the delay in the cancer returning.
It will be 5 years for me next April and when I last saw my surgeon I asked would it be possible to stay on Arimidex she said that because they were not sure of the long term effects she would prefer me to come off it for a while and then perhaps resume it later. I too have had 3 bone denisty scans which also show that I am showing signs of osteoporosis in my lower spine. I have also had an oophrectomy. Apart from little niggles of feeling stiff I am so glad that I was able to take this drug as at the time of my diagnosis it was very hard to get hold of. I just wonder if we are allowed to go onto another brand of inhibitor?
Oddly enough I was talking about this with my other half a few days ago as I felt I'd seen or read somewhere about taking it after 5 years. (I actually swapped to Aromasin).
It's a double edged sword, isn't it - on the one hand I want to be able to say 'right - 5 years and I'm finished with treatment' and on the other hand there is the 'security' of taking something that's working.
I had 2 years tamoxifen and will have done 3 years A/I in November next year. I will see my Onc in the August and by then hope to be informed enough to discuss it with her. On balance, for me, if the pros outweigh the cons I would rather keep taking it.
One to keep an eye on.
In January, I will have been on Arimidex for 5 years. I was dx in May 2004 with IDC, had mastectomy, chemo and radiotherapy, then Tamoxifen.Blood tests in Dec 04 confirmed I was post-menopausal after chemo (age 41),which is when I started Arimidex. I had a bleed (mini period) in Jan 2006 and then had an oophrectomy. Had a bone density scan before starting Arimidex and a follow up a year later which showed some osteoporosis so am now also on alendronic acid. My onc also says if I'm tolerating the side effects (not sure I am but it's very hard to remember what normal feels like)to keep taking it for the foreseeable future, until studies reveal more. Not sure when this will be as I think Arimidex was pretty new in chemo-induced menopausal women in 2005. Looking forward to hearing from others in this position.S
PS Last saw my onc in Feb so stuff may have moved on
I've been on Aromasin for 2.5 years so far. I had a similar discussion with my onc and if I get to 5 years I shall certainly consider continuing to take it. Yes there are side effects but I think they are worth it if it prevents the cancer from returning.
Thanks Josie, I will ask for a scan. Having been through mastectomy, chemo, rads, herceptin, diep reconstruction and lately augmentation of other side, I guess I shouldn't be afraid of a little tablet! Oddly enough, I am!
Good luck to you too, Maggie
Hi Maggie, I have not had any major problems with Arimidex and think that the advantages of taking it outweigh any minor side effects. I do sometimes suffer from stiff joints and muscles but that could just be an age thing (I'm 58) rather than the Arimidex! It might be worth asking for a bone density scan (if you haven't already had one) before you start taking them as one of the main side effects is thinning of the bones. This can then be repeated once you have been taking Arimidex for a while to see if your bone density has been affected.
Yes, I am now 5 and a half years post diagnosis - things do get easier the further away from diagnosis you are. I hope you do decide to take Arimidex - as my onc said "It is the Gold Standard treatment for postmenopausal women". Good luck. Jo
Hi Josie, I have just completed two years on tamoxifen and been changed over to arimidex. I feel reluctant to take it as at present I have no joint pains (I am 65). Did you have any problems on Arimidex? Glad to hear you are five years past dianosis.
I was counting the days (only another 2.5 years to go)until I could stop taking this drug.
Please let them find out that 5 years gives you enough treatment!
Hi everyone. I have taken Tamoxifen for 2 years and Arimidex for 3 years. Had consultation with onc yesterday and he is recommending that I continue with Arimidex for a further year, possibly two. He said that there is research currently being undertaken which suggests there are benefits to be gained from continuing with Arimidex beyond 5 years, although it is not as yet "set in stone". Just wondered if anyone else has been given the same advice?