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Nervous about switching from Letrazole to Exemestane

Posted by blair01 @blair01, Jul 3, 2025

Hi - I have been on Letrazole 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 with spine and brain MRI plus chest CT and bone scan (insurance wouldn't cover PET). Anyway, my oncologist said to try a "drug holiday" to see if the letrazole could be causing it. The numbness is noticeably better after a week off the letrazole (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. Thanks for anything you can share!

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mariam58 | @mariam58 | Jul 15 1:27pm
In reply to @brightlight66 "@loridalton I was also diagnosed with PILC in June 2024. Had a single mastectomy (3 nodes..." + (show)
Profile picture for brightlight66 @brightlight66

@loridalton I was also diagnosed with PILC in June 2024. Had a single mastectomy (3 nodes with carcinoma), chemo, excision surgery to clear margins and radiation. I tried Letrozole for 2 months with carpal tunnel, insomnia and bone pain, tried Exemestane for 1 month with GI issues and have now been on Anastrozole for 9 months. I'm 67, have 3 trigger fingers, insomnia and recently depression, so I took a drug holiday for 2 weeks and feel GREAT. Totally back to myself again.
I don't want to start another AI, so I'll go back on Anastrozole at some point and do my best.

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@brightlight66 Thank you for sharing your experience. All the best going forward.

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mariam58 | @mariam58 | Jul 15 1:29pm
In reply to @judithgrossman "@mistymar Thanks for the advice and in particular thanks for sharing your experience. with degree and..." + (show)
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@mistymar
Thanks for the advice and in particular thanks for sharing your experience. with degree and quality of pain. I was struck when you wrote "Just general every day [bone and joint pain] but also the moving areas of acute pain like being stabbed." The extent of the acute pain I have experienced on AI (letrazole to date) has been striking and your description reminded me of my own experience. The pain is not in any ways similar to the sensation of MSK pain I have experienced in the past pre letrazole. When I move some areas it feels like what I can only describe as biting pain- not aching, not sore, not strained or overused. In fact certain movements amke me cry out in pain. I have been off letrazole since the end of May ( three months on it) . since then had 16 sessions radiation. Had to take naproxen/ppi vimovo to be able to hold arms in proper position for radiation . Of course raised blood BP as did letrazole. Sleep disturbance acute as well. I am now planning on exploring the role of pre-existing fibromyalgia in CONJUNCTION with breast cancer treatment as an explanation for the persistent acute long term and QOL threatening symptoms. Previous Fibro was not particularly disrupting.

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@judithgrossman Thank you for sharing your experience. All the very best! These are challenging times.

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mariam58 | @mariam58 | Jul 15 1:30pm
In reply to @alibee "Hi, I made the switch to Exemestane because of joint and back pain, after being on..." + (show)
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Hi, I made the switch to Exemestane because of joint and back pain, after being on Letrozole for over a year. I was hesitant to make the change, fearing the outcome could be worse, but it ended up just fine. I do still have a little joint and back pain, but it’s tolerable, and as many have stated, getting up and moving works wonders! Good luck with your decision!

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@alibee Thank you for sharing. I am still unsure. Your information makes we want to at least try Exemestane. Be well and good luck.

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mariam58 | @mariam58 | Jul 15 1:31pm
In reply to @roberta75 "I took Letrozole for over 5 years for ER and PR +. I also took Zyrtec..." + (show)
Profile picture for roberta75 @roberta75

I took Letrozole for over 5 years for ER and PR +. I also took Zyrtec to help with the pain. In 2025 I was diagnosed with TNBC . I had a mastectomy followed by chemo. It was suggested that I take Claritin for bone pain. It seemed to help. It might also help with AI side effects. Maybe check with your medical team to see if Claritin would help with side effects.

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@roberta75 Thank you for sharing. I have not heard about taking Claritin or Zyrtec to help with the side effects. I will ask my oncology team. Appreciate that information. Take good care

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wews | @wews | Jul 16 6:34am
In reply to @mariam58 "Good morning, I may switch to exemestane. I have been taking Letrozole for 10 months but..." + (show)
Profile picture for mariam58 @mariam58

Good morning, I may switch to exemestane. I have been taking Letrozole for 10 months but have many side effects especially joint pain. I was diagnosed with ILC one year ago. Has anyone made this switch? Thank you!

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I have read a lot about the Gp1 weight loss drugs helping with inflammation which also helps reduce joint pain. I plan on speaking to my oncologist about trying a very low dose of one to see if it would help. A friend in AI meds for a long time and estrogen depleted said it has worked wonders for her. She isn’t taking enough for weight loss and I wouldn’t want to either since I don’t need to lose weight but losing inflammation would be wonderful. Might be worth a try asking about it. There are also studies saying it has been found to reduce incidence of breast cancer reoccurrences which would be an amazing benefit.

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ladydinana | @ladydinana | Jul 16 7:35am
In reply to @brightlight66 "@loridalton I was also diagnosed with PILC in June 2024. Had a single mastectomy (3 nodes..." + (show)
Profile picture for brightlight66 @brightlight66

@loridalton I was also diagnosed with PILC in June 2024. Had a single mastectomy (3 nodes with carcinoma), chemo, excision surgery to clear margins and radiation. I tried Letrozole for 2 months with carpal tunnel, insomnia and bone pain, tried Exemestane for 1 month with GI issues and have now been on Anastrozole for 9 months. I'm 67, have 3 trigger fingers, insomnia and recently depression, so I took a drug holiday for 2 weeks and feel GREAT. Totally back to myself again.
I don't want to start another AI, so I'll go back on Anastrozole at some point and do my best.

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@brightlight66 I don’t know a thing about PILC but my oncologist suggested starting with an every other day dosage to begin Anastrozole. I didn’t, I jumped in at every night and am not having any problems. I just turned 69 and my cancer was DCIS. My pharmist also said it was the one best tolerated by most.

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angele2times | @angele2times | Jul 16 10:54am
In reply to @roberta75 "I took Letrozole for over 5 years for ER and PR +. I also took Zyrtec..." + (show)
Profile picture for roberta75 @roberta75

I took Letrozole for over 5 years for ER and PR +. I also took Zyrtec to help with the pain. In 2025 I was diagnosed with TNBC . I had a mastectomy followed by chemo. It was suggested that I take Claritin for bone pain. It seemed to help. It might also help with AI side effects. Maybe check with your medical team to see if Claritin would help with side effects.

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@roberta75
So sorry about your mastectomy! after the Letrozole?? did I read that right? I am shocked by that if I did. I am currently on Exemestane, and little to no side effects but I drink PROPEL a water supplement with electrolytes. It's been very helpful. What is TN, and the last two initials are breast cancer I think, right?

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loridalton | @loridalton | Jul 16 11:30am
In reply to @mariam58 "@loridalton Thank you for sharing! I had pleomorphic LCIS but regular ILC. Good luck with your..." + (show)
Profile picture for mariam58 @mariam58

@loridalton Thank you for sharing! I had pleomorphic LCIS but regular ILC. Good luck with your MRI. Take care

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@mariam58 I just typed it wrong. I also have PILC. How has your experience gone? I try to find information on the internet about treatment, but much of it is conflicting. I know there are many variables like genetics, onco test results, and positive lymph nodes.

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roberta75 | @roberta75 | Jul 16 11:51am
In reply to @angele2times "@roberta75 So sorry about your mastectomy! after the Letrozole?? did I read that right? I am..." + (show)
Profile picture for angele2times @angele2times

@roberta75
So sorry about your mastectomy! after the Letrozole?? did I read that right? I am shocked by that if I did. I am currently on Exemestane, and little to no side effects but I drink PROPEL a water supplement with electrolytes. It's been very helpful. What is TN, and the last two initials are breast cancer I think, right?

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@angele2times
Hi, my second breast cancer was Triple Negative Breast Cancer (TNBC). It is different because it was not estrogen or progesterone positive. So an AI like Letrozole is not a treatment option. The standard of care is chemo.

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mistymar | @mistymar | Jul 16 12:43pm
In reply to @mariam58 "@roberta75 Thank you for sharing. I have not heard about taking Claritin or Zyrtec to help..." + (show)
Profile picture for mariam58 @mariam58

@roberta75 Thank you for sharing. I have not heard about taking Claritin or Zyrtec to help with the side effects. I will ask my oncology team. Appreciate that information. Take good care

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@mariam58 I’ll be interested in what they say. When I went through chemo, they put me on loratidine (Claritin) once daily for a week each time to help with the pain and inflammation. I still had to take an anti inflammatory with it for several days. Later I read an article out of Sweden that did a study (collecting info on record over 10 years of usage) on the use of loratidine and dexloratidine (prescription strength) on breast cancer reoccurrence and their results were positive. Asked my oncologist if I should consider it and he was not that enthused - wanted to wait for further info. Have also read articles on long term side effects of these types of antihistamines which can really muddy the picture. So as I said, will be interested in your oncologist input.

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