Nervous about switch from Letrozole to Exemestane
Hi - I have been on Letrozole for 2 years (invasive ductal carcinoma, node positive, did chemo and radiation, double mastectomy and oophorectomy...was diagnosed right after my 46th bday). Recently I've had neuropathy for the first time (it moves around/switches which limbs it affects...strangest thing). Ruled out metastasis and oncologist said to try a "drug holiday" to see if the letrozole could be causing it. The numbness is somewhat better after a week off the letrozole (but not gone). He suggested I could switch to Exemestane to see if it solves the problem but I am nervous to make the change -- sort of feels like the devil you know is better than the devil you don't? My question is -- has anyone had a bad experience with Exemestane (beyond the obvious hot flashes/joint pain as I'm used to those?). I'm specifically nervous about the "mild androgenic effects" that it can have. I have lost my breasts and just finally grew my hair back out -- I don't want anything to make me feel any less feminine than I already do at times. Also - has anyone else had late onset neuropathy from letrozole? Thanks for anything you can share!
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Hi @blair01, and welcome to our Breastcancer.org community!
We're so very sorry for the reasons that bring you here, but so glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!
While you wait for others to weigh in with their experiences with letrozole and switching AIs, we wanted to share this thread with you to get some insight on what you might expect on exemestane:
Additionally, have you given thought to or asked your doctor about the possibility of going back to letrozole if the effects of Aromasin/exemestane are too difficult? Also, you could talk about trying anastrozole/Arimidex. Here's some more info on the aromatase inhibitors and what to expect:
Aromatase Inhibitors: Benefits, Side Effects, and More
We hope this helps! Please let us know what else we can help with while you wait for others to chime in!
—The Mods
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Thank you so much for your thoughts! I really appreciate it.
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Hi there. I was switched from Anastrazole to exemestene. 3 weeks in i had my yearly physical with my PCP. He did the usual labs. My liver enzymes were off the chart. He was concerned. He contacted my MO who said its unusual so assumed I must be fighting something. PCP said its a sude effect. Anyway long story short they took me off exemestene for a week retested liver and it was normal again. Back on anastrazole with the SE. My MO still refuses to accept the results of exemestene saying its extremely rare. Since then I have heard of other women experiencing liver issues 1 of which was a close failure and yet none of this is being reported. I understand that feeling of switching. You can always go back to the old one if the new one isn't working.
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Hi blair1
I had a similar diagnosis as you, diagnosed at 47, also node positive, had oopho etc.
I switched from Anastrozole (which I understand works similar to Letrozole) to Exemestane like a year ago, 5 years after I started hormone treatment. This was to try and alleviate arthritic pains. The pains are the same (not worse), and I didn’t get any new side effects.
Totally unscientific reasoning here but I would say: if your neuropathy is a freak side effect of anastrozole, if they move you to a drug with a different mechanism, I would say you shouldn’t expect the same freak side effect. Could you now get some different, freak side effect from exemestane? Of course, in cancer land anything is possible, but that would be rare, wouldn’t it? I think you have grounds to be cautiously optimistic here although of course I understand being uneasy.Best of luck,
LaughingGull
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blair1,
I’ve been in a very similar situation, though I didn’t have chemo, even though I was node-positive. I went through all the other treatments, and during the first 2.5 years on letrozole, the side effects kept getting worse. The pain became so intense that at one point I could barely put my feet on the ground—and I’m usually very athletic.
My medical oncologist suggested taking a 6-week break and then switching to exemestane, since it works differently than letrozole or anastrozole. The difference was significant. After about five months on exemestane, most of the letrozole-related side effects disappeared.
I won’t say exemestane was a walk in the park, but it was much more manageable than letrozole. I ended up staying on exemestane for another 2.5 years. Since January 2025, I’ve been off all medications. I do feel better—definitely improved—but not quite 100%. I suppose I’m learning to live with a few lingering side effects.
If I were in your shoes, I would definitely consider giving exemestane a try. Everyone reacts differently, but it really made a difference for me.
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@snoglo27 - Hi, and welcome to the community!
Thank you so much for jumping in and sharing your experience. It’s really helpful, especially for those who are weighing similar decisions.
We're so glad you've joined us, and hope you’ll continue to post and connect with others. If you ever need help finding information or navigating the forums, feel free to reach out. We're here for you!
The Mods
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