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Side effects of aromatase inhibitors

AB1
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I had my mastectomy back in 2021 for ER+ breast cancer followed by some adjuvant chemotherapy and radiotherapy and seemed to sail through all of that without too much trouble. 

Unfortunately, I am now at the end of my tether with the side effects from all 3 types of the above drugs which they are wanting me to take for a total of 10 years.  I have had anastrozole, letrozole and am currently on Exemestane and I can’t get on with any of them. 

I am an active person who loves running and hiking and walking my dogs and all of these drugs are causing me so much pain in my muscles and joints that it is affecting every aspect of life. On top of this I have severe insomnia and despite getting respite from this occasionally, as soon as I think they’ve found something that works, a week later it stops working. 

Please give me any advice you have to get me out of this hell as I don’t want to increase my chances of the cancer returning but quite frankly at the moment would welcome death!

Please note I follow all advice regarding caffeine and not using my devices before bed. I have no TV in the bedroom and can count on one hand the units of alcohol I consume in a month. I am not a stressed person and until the insomnia kicked in was always Mrs brightside. My family nicknamed me Pollyanna and I hate who I am becoming due to a tiny little pill. 

Thanks for reading. 

  • Hi AB1,

    My name is Keith and I’m one of the Cancer Information Nurse Specialist

    Welcome to the online community.

    This sounds like a terrible time for you right now.
    I can only imagine what you are going through.

    We are glad you have reached out to us.

    Anastrozole, Letrozole and Exemestane are all hormone therapy drugs given to ladies with breast cancer who have been through the menopause.

    You obviously know the benefit of having these drugs in reducing the risk of your cancer coming back. Unfortunately, the side affects you are explaining are common. I can only imagine what is going through your mind regarding taking this drug for 10 years with your current side effects.   

    Management of the side of these drugs can be difficult in some situations. What have your treatment team suggested so far?

    It may be worthwhile looking at our information on menopausal symptoms of cancer treatments and different ways you may be able to experiment with any of the options listed to see you can achieve any improvement with the symptoms you are experiencing .

    In situation like this we always advise keeping in close contact with your treatment team to methodically manage this situation.

    It’s important to let your treatment team know how this is affecting you both emotionally as well as physically. This is so they can give the best possible support both physically as well as emotionally.

    It important that you achieve the best possible quality of life for you. In some situation your treatment team may give you a break off this treatment to give you a little respite so you can have a open and frank discussion with your team on how this situation is managed moving forward and any possible alternatives. But this would be the last resort as you very well know why your treatment team will want you to continue this drug for as long as possible.

    Regarding your issues with sleeping looking at this information on Sleepio may be helpful

     

    On this platform it can be difficult to have a two-way conversation and to fully understand what you are going through.

    If you’d like further explanation or have any other questions, please feel free to recontact us. Or if you it may help to discuss things with someone outside the loop please feel free to give us a call or contact us via our web chat platform.

     

    take care.

    Keith, Cancer Information Nurse Specialist

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

    Ref KM/DW

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