Exemestane and extreme fatigue

Posted by stephied @stephied, May 7 8:00pm

Hello. I am new here. I had a mastectomy in January 2016. 4.5 cm tumor with 4 positive nodes. The tumor tested 100% for hormone receptors. Had chemo and rads and and oophorectomy in December 2016. I will be taking Exemestane until October 2026. I am so tired all of the time and it’s getting worse. Anyone else experience this? TIA

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@treb68

Thank you so much for caring and responding. I go to a Cancer Clinic and the original Medical Oncologist I had says said 5 years and then after about a year she left. A got a variety of different doctors and nurse practitioners. Finally they settled on a nurse practitioner and she is the one who last year told me to stay on it. I started crying and told her I was looking forward to going off but I didn’t want to jeopardize my cancer coming back. She said I could try going off for a month if I want but .. that was it.
I don’t feel like my voice was heard and I am going to see her next month so I will have another discussion with her.

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Unfortunately oncology professionals get very focused on keeping us alive (rightly so). While I am very grateful for that, it feels like many of them forget that we are also focused on “living”.
I have found that if I can ask why or how, sometimes more than once, it can help. I don’t know if this helps but I might ask specifically what is the protocol for how long I need to take it and does the benefit for me personally outweigh the side effects that really affect my quality of life. Then I might actually ask if there is another choice because I just can’t take this anymore.
After you see her next month, will you come back and tag me and let me know how it goes?

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I love the engagement here. I so appreciate everyone chiming in and I, too, look forward to hearing back from everyone. I’ll also for sure let you all know what my onco says. I see him next month and I see my family doc tomorrow. Thank you all again so much for your engagement on this. It’s very comforting.
-Stephanie (Steph or Stephie 😉)

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@auntieoakley

Unfortunately oncology professionals get very focused on keeping us alive (rightly so). While I am very grateful for that, it feels like many of them forget that we are also focused on “living”.
I have found that if I can ask why or how, sometimes more than once, it can help. I don’t know if this helps but I might ask specifically what is the protocol for how long I need to take it and does the benefit for me personally outweigh the side effects that really affect my quality of life. Then I might actually ask if there is another choice because I just can’t take this anymore.
After you see her next month, will you come back and tag me and let me know how it goes?

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Thank you and I very definitely will tag you and let you know!

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@treb68

Thank you so much for caring and responding. I go to a Cancer Clinic and the original Medical Oncologist I had says said 5 years and then after about a year she left. A got a variety of different doctors and nurse practitioners. Finally they settled on a nurse practitioner and she is the one who last year told me to stay on it. I started crying and told her I was looking forward to going off but I didn’t want to jeopardize my cancer coming back. She said I could try going off for a month if I want but .. that was it.
I don’t feel like my voice was heard and I am going to see her next month so I will have another discussion with her.

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Initially when I saw the surgeon, she said 5-10 years on ai. Then saw oncologist and he said 5 years - that research doesn’t really show a major difference in increasing the time to 10 years. I’ve seen some on here talk about the “breast cancer index” and other tests that are supposed to help determine if you should stay on longer. I went over one of them online but didn’t feel it gave me the right information as it indicated I wouldn’t benefit from any ai therapy but didn’t take into account oncotype, Ki67 etc. I haven’t really researched a lot more, May when it gets closer to the 5 year mark.

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@mistymar

Initially when I saw the surgeon, she said 5-10 years on ai. Then saw oncologist and he said 5 years - that research doesn’t really show a major difference in increasing the time to 10 years. I’ve seen some on here talk about the “breast cancer index” and other tests that are supposed to help determine if you should stay on longer. I went over one of them online but didn’t feel it gave me the right information as it indicated I wouldn’t benefit from any ai therapy but didn’t take into account oncotype, Ki67 etc. I haven’t really researched a lot more, May when it gets closer to the 5 year mark.

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The breast cancer index isn’t really a test that you take on line or answer questions. It is a genomic lab test that is used in conjunction with other tests to help guide decision making for treatment plans.
Your own voice has to be part of that decision making process as well.

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Go online and read this study. I. Don’t know how to
Link you to it. I was on Anastrozole fir 2years and that did untold damage to my back and joints. I’m now on Exemestane for 2 years and I take it every second day and I take it in the evening/night. This way I sleep
Off the worse of the tiredness. X

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Thank you for that, Rosa. I will definitely bring this up at my onco appointment next month! I also take mine at night....

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@mistymar

Going through some of the same. Lumpectomy June 2023 then chemo and radiation. On Anastrazole for 7 months but changed to exemestane in November 2024 due to side effects. Last visit (March 2025) he even noted I looked tired. So told him I am constantly tired, falling asleep in the middle of doing things, naps etc that I’ve never needed before. Also been gaining weight even though nothing else (diet and exercise) is unchanged and I’ve maintained static weight since the start of this until 8 weeks on exemestane. Thyroid was tested and normal several months ago, bloodwork otherwise looks ok, so the only answer I get is that I must be depressed because fatigue is a symptom of depression and I should seek therapy and try medications. I’ve reached the point where I’ll acknowledge something if specifically asked but don’t offer much anymore because it’s never a side effect of the medications so not something they need to treat. I think both problems relate to the exemestane because I was stable before it started but a, just told they’re not a side effect of the medications. So we just do the best we can with what we have. Don’t know that this helps but you’re not alone.

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Hello, nice to meet you, you are so determined and courageous! Have you considered getting a second opinion? Your insurance may cover it, and even if it doesn’t, I suggest it would prove valuable. Especially if you can obtain one from a university cancer program.

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Hi! I'm new to this site. I had a bilateral mastectomy. I was diagnosed with Pagets disease of one breast. Had the other removed prophylactic. DCIS in situ. Nodes were clear .
Given this, why should I take arastrozole?

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I have been on Exemestane for 2 years now and I am tired every single day. I 'm not good with taking naps so I just keep pushing forward.

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