Side Effects of Aromatase Inhibitors

Posted by coldia @coldia, Mar 9, 2023

It was suggested that I start on an AI after my upcoming lumpectomy. I am just concerned about some of the side affects that I am reading about but wondering if the risk of not taking them and having another recurrence is worth it. I would appreciate any thoughts or experiences anyone has had when taking them. Thank you ☺️

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I think it helps to keep in mind that forums tend to have posts from those who experienced significant side effects, and many people do okay on these meds. If you do decide to try an aromatase inhibitor, you can try different ones and different manufacturers if any problems arise (I am sensitive to fillers). In terms of side effects, I found that my body adjusted to the meds over time, and that exercise helped a lot with any joint pain, though mine was very minor.

I felt safe on the meds. I miss them now that I am done!

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@windyshores

I think it helps to keep in mind that forums tend to have posts from those who experienced significant side effects, and many people do okay on these meds. If you do decide to try an aromatase inhibitor, you can try different ones and different manufacturers if any problems arise (I am sensitive to fillers). In terms of side effects, I found that my body adjusted to the meds over time, and that exercise helped a lot with any joint pain, though mine was very minor.

I felt safe on the meds. I miss them now that I am done!

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Thank you for your reply helpful suggestions.
Wishing you good health!

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I was on Letrozole for 6 years. I really didn’t notice any side effects from it. I do exercise regularly so maybe that helped.

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I have been taking Aromasin (Exemestane) for just about 4 months after lumpectomy for DCIS/5 radiation treatments. The start was kind of rough with lots of fatigue and generally just not feeling well. Over time I am feeling better, but still have poor sleep at times which can be a side effect. I feel like at age 61 I want to stay on the medication, but have to weigh against side effects and quality of life. But I feel safer on them than not....

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I too think about quality of life and how my day to day life might be affected. I am 64 and this is my 3rd lumpectomy. They talked about mastectomy but as long as it’s staying in the duct (by being caught early) I would rather not go that route. Since I seem prone to BC, I think shutting down the estrogen is my best hope to stop it so I am leaning towards giving it a try and see how I do.

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@coldia

I too think about quality of life and how my day to day life might be affected. I am 64 and this is my 3rd lumpectomy. They talked about mastectomy but as long as it’s staying in the duct (by being caught early) I would rather not go that route. Since I seem prone to BC, I think shutting down the estrogen is my best hope to stop it so I am leaning towards giving it a try and see how I do.

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As everyone has their own experience on AI’s it’s best to follow the advice of your oncologist and see what your experience is. I am at one year and doing well… and hopefully blocking new breast cancer from developing!

I posted my experience on another feed, on this topic, this morning.

Hope you have a good experience as many of us do. 🌸

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I've been taking anastrozole for the eight years since I finished treatment for my breast cancer. Since I was diagnosed at stage IIIc my oncologist wants me to continue taking it. I've been lucky with side effects - no joint pain or all the other grief so many have with it, but my hair and bones have thinned. I've been getting twice annual Prolia injections and stay active - I walk a lot - and that seems to have reversed the osteoporosis a bit. I've never had a broken bone and count myself lucky.

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@surpriseca

I have been taking Aromasin (Exemestane) for just about 4 months after lumpectomy for DCIS/5 radiation treatments. The start was kind of rough with lots of fatigue and generally just not feeling well. Over time I am feeling better, but still have poor sleep at times which can be a side effect. I feel like at age 61 I want to stay on the medication, but have to weigh against side effects and quality of life. But I feel safer on them than not....

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I have been on Anastrozole for 2 years with no noticeable side effects until the end of the first year. Then I started experiencing a wide variety of side effects. Most women I asked if they were/had experience with any side effects said no. That random effort was getting me nowhere and making me feel like a hypochondriac. I made a call to doctor’s office and got the understanding responses that are the limitations of a someone who prescribes and not someone who experiences. I received an email from my pharmacist saying my prescription for Letrozole was ready for pick-up. First I heard about this option. In checking the value of this change I realized that the devil you know could very well be better than the devil you don’t know. I opted to stay with Anastrozole and take charge of making my side effects as manageable as I best could. I am making progress!!!

To all the people who have brought their knowledge to this new Dawn for women in living a longer life with breast Cancer I an so grateful.
To the women who find the need to remind those heroes that their experience in wanting life - along with a quality of life - is a necessary inclusion.
Between those heroes and forums like this maybe we can add so much to understanding of not only Cancer, but women’s experiences along the way. Value +

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@windyshores

I think it helps to keep in mind that forums tend to have posts from those who experienced significant side effects, and many people do okay on these meds. If you do decide to try an aromatase inhibitor, you can try different ones and different manufacturers if any problems arise (I am sensitive to fillers). In terms of side effects, I found that my body adjusted to the meds over time, and that exercise helped a lot with any joint pain, though mine was very minor.

I felt safe on the meds. I miss them now that I am done!

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Can you share what "miss them" means for you now you no longer take? It was surprising that is something we might experience. first took Letrozole and struggled with side effects for about 2 years and stopped could not feel heard. Got another Oncologist 3-4 years post Mastectomy/Lymph node + surgery , started on Exemestane , without additional concern. In 2021 oncologist moved out of state . She was the BEST in my book. With Covid stressors and permanent oncologist not available began difficulty arranging fu.

Following my own dx Covid July 2022.. , I had serious communication, memory issues and lost my course of treatment and gave up. So I certainly appreciate your comment and hope to gain new insight. Thanks for any sharing you are comfortable to provide.

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@motraveler I just meant that I "miss" the feeling of relative safety that I had while on meds.

People take aromatase inhibitors longer these days. I was told 7 years was as good as 20. I wanted to stay on them another two years past 5 years, but I had a Breast Cancer Index test that said no benefit from extending therapy. And I needed to focus on bones (I had osteoporosis before going on letrozole).

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