Has anyone changed from Anastrozole to Exemestane?

Posted by rozv @rozv, Jan 7, 2024

I had DCIS 16 yrs ago and developed memory/cognitive issues along w hair loss, joint pain,etc with Tamoxifen so had to discontinue it after 2 years. There were no other AI's back then so that was the end of my treatment . I was diagnosed with a new DCIS in the opposite breast in Feb 2023.. I had surgery, radiation and began Anastrozole in May. The joint pain and insomnia became severe within 2 months with an average of 3 hrs of sleep a nite/napping during the day, heating pads on my knees and back, etc which impacted my life style and marriage. Then I started to experience brain fog/memory issues so discontinued the Anastrozole with a month long break. The joint pain and insomnia resolved, and the memory issues have improved but are still an issue.
I just started on Exemestane 2 days ago and am wondering if anyone else is taking it and what their experience has been?. Thank you for your input and best wishes on your journey.

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May I ask if they considered dropping the dose. I have been researching tamoxifen because I am Awaiting my pathology results from dcis surgery. It appears 5mg works as well as 20mg. If they won't do that I am not taking any of them.

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Back then I don't believe there were even other doses of Tamoxifen or my oncologist would have recommended it... It was a big decision discontinuing the Tamoxifen as that basically ended my treatment,! And 16 yrs later here I am with the new breast cancer (not reoccurrence). So I feel we are very lucky to have different AI's to try in the event the side effects of one becomes intolerable

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Hi! Yes, I have made that switch! The anastrozole gave me "trigger thumb" at about two months in (my thumbs would get stuck in a bent position, and I had to manually pop them straight; kinda painful, definitely freaky). Stopped anastrozole, the issue resolved, started letrozole, the trigger thumb immediately returned. After an unsuccessful experience with tamoxifen, I started exemestane, and...Hooray! No trigger thumb! I've been taking it for almost a year now with very little side effects. I do feel stiff and creaky in the morning, or after sitting in the car on a long drive, but that gets worked out quickly as I move around. So exemestane is the AI that works for me; maybe it will be great for you, too! If not, try letrozole. There are so many stories of women who can't tolerate one AI, but another works for them. Hugs to all 🙂

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Thank you for your input!! I'm encouraged by your experience. So far I haven't had any pain at all, no dry eye, and sleeping well! Fingers crossed I continue to have good tolerance to this AI like you!

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I switched also. The anastrozole gave me endless migraines, the radiation left me with tremendous rib pain, reclast just about did me in, I have a seroma that won't go away....so when I switched to exemestane I was prepared for the worst! Much to my surprise and delight I have few side effects, all of which are doable. It's really hard to guess which drug or procedure will be best tolerated.

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Profile picture for sarahmh @sarahmh

Hi! Yes, I have made that switch! The anastrozole gave me "trigger thumb" at about two months in (my thumbs would get stuck in a bent position, and I had to manually pop them straight; kinda painful, definitely freaky). Stopped anastrozole, the issue resolved, started letrozole, the trigger thumb immediately returned. After an unsuccessful experience with tamoxifen, I started exemestane, and...Hooray! No trigger thumb! I've been taking it for almost a year now with very little side effects. I do feel stiff and creaky in the morning, or after sitting in the car on a long drive, but that gets worked out quickly as I move around. So exemestane is the AI that works for me; maybe it will be great for you, too! If not, try letrozole. There are so many stories of women who can't tolerate one AI, but another works for them. Hugs to all 🙂

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Thank you so much for this information. I am also going through the terrible side effects of anastrozole. Saw the doctor yesterday she’s giving me months and then we will decide on another pill. Sounds like emexestane maybe the final answer.

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I hope it works well for you too!! I have not had any side effects yet (!) and am cautiously optimistic. Best wishes for healing and comfort

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I had terrible cognitive issues while on anastrazole. When my doctor switched me to Exemestane 8 months ago, I noticed a huge improvement and very minimal other side effects. I hope it goes well for you. I think more women should be informed of how severely hormone-blocking medications can impact their cognitive function, especially if they're still in the workforce. I found out I had cancer on my FIRST day of work on a new job almost three years ago, and started on Anastrazole the very next month. I was put in a trial to see if the AI would help shrink my tumor. It did, but the negative cognitive effects really hurt me professionally, as my supervisor (after I'd been on the Anastrazole for a year) started wondering what the heck was wrong with me as I began having serious issues with my working memory, focus, etc. It negatively impacted my job performance for my first two years until I finally started looking into it further. I just met with my department manager and she even commented on how much better I am doing in my roll, and how "everything seems like it's finally all come together for you" work-wise. That was really bittersweet to hear, because it shouldn't have taken me 2 1/2 years to learn my job, but the positive is that even SHE noticed the difference (my supervisor retired before I switched medications). Good luck!

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I started on Anastrazole and did fine for the first few months. Of course brain fog and a little achy but nothing I couldn’t deal with and of course the brain fog could have been from the chemo or radiation. By 9 months though, it had gotten to the point where I was looking for the guy with the knife, everyday stabbing pains somewhere - just moved around. So we went to exemestane. Again fine for about 3 months then weight gain (10# in a week with no changes to diet or exercise, had to do 24 hr liquid fast to stop it) followed by extreme fatigue. While not sleepy per we, I would nod off in the middle of things, a bit afraid to drive later in the day. He did tests to rule out other causes, all neg. Then the insomnia hit - barely able to get 3 hours a night which made the fatigue worse. Felt weak, unable to do much so stopped going out. Didn’t want people to have to stop and wait for me. Along with this was elevated bp, heart rate, difficulty using my hands/thumbs (not really trigger thumb, just swelling and pain, thought it was arthritis). At about 18 months onto this, Told me to stop for 4 weeks and I took 6 because I didn’t even feel human till 4weeks. By then, few afternoon naps, 6-7 hours sleep, normal bp, back to my mile+ walk daily without stopping every 2 minutes to catch my breath, stopped forgetting what I was going to do and the pain/swelling in hands went away. He wanted me to restart, won’t entertain lower dose like every other day. Within 2 weeks it all started to come back. BUT no pain. I’m now about 2 1/2 weeks into Letrozole and we’ll see. Hopefully the exemestane works for you. Everyone reacts differently to each one and we have to eliminate the effects of the medication (no estrogen effects) from actual side effects of the drugs themselves. My oncologist says he’s had some patients who don’t tolerate any but we have to give them a try.

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Profile picture for sjburkie @sjburkie

I had terrible cognitive issues while on anastrazole. When my doctor switched me to Exemestane 8 months ago, I noticed a huge improvement and very minimal other side effects. I hope it goes well for you. I think more women should be informed of how severely hormone-blocking medications can impact their cognitive function, especially if they're still in the workforce. I found out I had cancer on my FIRST day of work on a new job almost three years ago, and started on Anastrazole the very next month. I was put in a trial to see if the AI would help shrink my tumor. It did, but the negative cognitive effects really hurt me professionally, as my supervisor (after I'd been on the Anastrazole for a year) started wondering what the heck was wrong with me as I began having serious issues with my working memory, focus, etc. It negatively impacted my job performance for my first two years until I finally started looking into it further. I just met with my department manager and she even commented on how much better I am doing in my roll, and how "everything seems like it's finally all come together for you" work-wise. That was really bittersweet to hear, because it shouldn't have taken me 2 1/2 years to learn my job, but the positive is that even SHE noticed the difference (my supervisor retired before I switched medications). Good luck!

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@sjburkie
I have been on Anastrozole for three years. Joint pain and hot flashes terrible. Are you have either of these symptoms? I also had a total hysterectomy which has caused more of a drop in estrogen. sboston

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