Forum Discussion

Janet_Plummer's avatar
11 years ago

Any positive experience of arimidex or other AIs?

I saw a different oncologist today as my usual doctor was on holidays. This fill-in lady made quite a pitch for me switching from the tamoxifen I am currently taking to an aromatase inhibitor.  Even though I am post-menopausal now thanks to chemo (or a combination of chemo & tamoxifen), I have been reluctant to switch to an AI as I have read so many posts here about joint and bone pain and lack of libido from women taking them.

The doctor pointed out, rightly I suppose, that it is people who have the side effects who usually post. She insisted that the majority of women on AIs don't experience these aches and pains or suffer from completely non-existent libido.

Can anyone tell me if this is true? Are there any women out there taking AIs and happily going about their lives without daily joint/bone pain. And are there any taking this medication who still retain at least some trace of a libido? My libido has declined anyway since being pushed into menopause by BC treatment and perhaps tamoxifen doesn't help either. But I do retain a bit of interest. I don't want to switch if that will be completely wiped out. 

 

 

3 Replies

  • Thanks for your replies ladies. The fact that I have not had one single response from anyone taking an aromatase inhibitor and saying it's all fine, only confirms my fears about them I'm afraid. I think the reason the fill-in oncologist was pushing them was that recently I took myself off to the GP and got a referral for a pelvic ultrasound. There was thickening of the uterine lining, as there usually is with tamoxifen patients, and I was sent off to a gynaecologist who recommended a D &C which I had recently. My regular oncologist has dismissed the idea of having an ultrasound saying it would inevitably lead to a D&C which would be a 'waste of money'...!

    I'm glad I had it done. It provided me with some peace of mind that there are no cancerous changes going on down there and I expect I might need to get it done again as I'm not even quite half way through my five years. But I think the fill-in oncologist saw this as me obsessing about the uterine cancer risk. I'm not really, I just want to be doing everything I can to safeguard my health and well-being.

    You're right Robyn and Deanne, there is so much to weigh up. Do you risk your long term health with tamoxifen - possible uterine cancer and damage to the liver - or do you suffer a daily misery of aching bones and joints and zero libido (I read in a book by a well-respected breast cancer oncologist John Boyages that women on AIs are often unable to climax). I know I'm getting older (49) and I have to accept the changes that come with that but I'm not ready to feel like an 80 year old yet. I think I will be sticking with the tamoxifen for now at least.

     

  • Hi

    My oncologist said a similar thing about most people not having major problems with hormone therapy. It probably is a fact that we are more likely to reach out when we are having problems rather than when things are going ok. But the consequence is we hear way more about the negative situations rather than a balanced view that includes positive feedback too.

    Maybe our doctors are in a better situation to make a call on this because they follow up with all their patients and see a more complete picture of how everyone goes.

    At at the end of the day everyone has different responses to different treatment anyway. I think all we can do is find out the facts about our situation from the doctors (difference it can make to recurrence vs different side effects such as osteoporosis etc) and then make a call on it. If you do make a change and it turns out for the worst I imagine you could just go back to tamoxifen. 

    I am going to be in the exact same situation as you soon (deciding whether to change from tamoxifen to an AI) and I will just be asking lots of questions until I feel I can make a decision that is right for me. Would just be so wonderful to have never had BC and therefore not having to contemplate any of these hard decisions, wouldn't it? Best of luck with your decision. Take care. Deanne xxx

  • Hi it's nice to hear from you.I am post menopausal and take tamoxifen.I can't change because of my advanced osteoporosis.I have my yearly check for my osteo in June,and my oncologist said that we could discuss changing from Tamoxifen if my bones are improving.She also said though,that the difference is really minimal,and because I am tolerating Tamoxifen so well,she would probably recommend staying on it.I am happy to do this,because the Aromatase inhibitors do damage your bones when you are post menopausal. There are so many things to consider aren't there? Cheers Robyn