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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Profile picture for penny21 @penny21

Hi MistyMar, I am taking some other “non conventional” things, such as Pectasol, a modified fruit pectin that has had a number of studies done on it. Also take powdered Cordiceps mushroom daily.
Hard to prove what has had the most effect but my doctor claims the Letrozole. Maybe not just the Letrozole…my blood cancer markers have decreased though. One was in the normal range, one has continued to get lower, but not normal. I understand your hesitation about stopping the medication! It is all pretty scary. Thanks for your reply.

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I have the same problem which is why I’m hesitant to stop medications. Did chemo because oncotype positive. Tumor marker dropped about 20 points (needed to drop 50 to hit high normal), then after 3 months started back up again almost to start level. At that point, he ordered brain MRI and pet scan. Neither of which showed new tumor growth. Then it dropped back to where it was before, then another 10 points and that’s where I sit. He said it can happen and as long as stays stable, monitor but not considered a problem. Easy to say but sits in your mind that maybe there’s a reason. And yes, I’ve read multiple articles about tumor marker specificity and that some feel they’re worthless but my doctor still uses them for monitoring and I have to feel he knows what he’s doing. I’ll look into the Pectasol (haven’t heard about that before), already researching other naturals like mushrooms.

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Profile picture for harkey @harkey

Hi, I recently took a 6 week washout period from letrozole, and then started exemestane about a week ago. The last 2 nights I awoke with excruciating Charley horse in my right quadricep. The pain and muscle swelling lingered into the daytime hours, making it difficult to even drive.
Has anyone else experienced these terrible leg cramps?
I'm terrified to go to sleep tonight!
It makes the unpleasant side effects I had while on letrozole seem mild, and I am debating going back on letrozole.
Thank you for any guidance!
Xo, Harkey

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I’m on Anastrozole and it’s the best so far. Takes 6 weeks to 2 mos for side effects to lessen. And some physical therapy

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Profile picture for ohareip @ohareip

I’m on letrozole and have a trigger finger ( which is bearable) but I’m likely going to get it sorted with a steroid injection
I’ve had horrendous leg cramps in bed , quite often if I stretch my foot out
I saw a physical therapist who said I had spasm of my calf muscles and showed me how to do stretching exercises which really help
My pain isnt persistent so I know it’s to do with muscles and tendons so if you are sure your pain isn’t sinister ( leg cramps aren’t usually) might be worth doing some stretching exercises

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have you tried magnesium supplements? f not, it's worth a try. Take them before you go to bed.

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Profile picture for harkey @harkey

Hi, I recently took a 6 week washout period from letrozole, and then started exemestane about a week ago. The last 2 nights I awoke with excruciating Charley horse in my right quadricep. The pain and muscle swelling lingered into the daytime hours, making it difficult to even drive.
Has anyone else experienced these terrible leg cramps?
I'm terrified to go to sleep tonight!
It makes the unpleasant side effects I had while on letrozole seem mild, and I am debating going back on letrozole.
Thank you for any guidance!
Xo, Harkey

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Thank you! I started it two nights ago and have not experienced the awful cramps so far 🙏

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Profile picture for harkey @harkey

Hi, I recently took a 6 week washout period from letrozole, and then started exemestane about a week ago. The last 2 nights I awoke with excruciating Charley horse in my right quadricep. The pain and muscle swelling lingered into the daytime hours, making it difficult to even drive.
Has anyone else experienced these terrible leg cramps?
I'm terrified to go to sleep tonight!
It makes the unpleasant side effects I had while on letrozole seem mild, and I am debating going back on letrozole.
Thank you for any guidance!
Xo, Harkey

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I was on Letrazole since my mastectomy about a year ago. I could barely move with the joint pain and I had edema really bad in both legs--but especially my right leg along with constipation at 79 and weight gain. I mistook side effects for old age which is true 🙂 - but after reading about the side effects and moving became increasingly difficult- I stopped to see if a change off it would make a difference. It wasn't even 2 days that my joint pain, edema cleared up dramatically... Losing weight and constipation are still a work in progress but much better. Walking 4-5000 steps, and 10-12 glasses of water daily didn't touch the side effects! I was hesitant to stop. but so glad I did. 4 more years of pain, swelling. My Dr wants me to try exemestane- I hesitate with looking at side effects.. but will give it a try.

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Profile picture for brooklyn22 @brooklyn22

To everyone taking hormone receptors drugs God Bless you ALL!!!!!!! Every Scientist, Drug Company every Oncologist Dr that prescribes should be CONCERNED of miserable side effects!!!! Chemo is one thing these drugs sound horror every one of them now is it they have not found BETTER more Natural user friendly in 2025!!!!! This scares me the side effects grueling.

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Natural estrogen's blocker is suggested by NutritionFacts.org Dr Greger who is a Vegan but will you follow him using plant base food, he shows you research papers but not sure if they do trials like the pharma do when they develop drugs. Really not sure, the world is pro pharma who at the end produce drugs that save lives and makes tons of money but you have to spend more money on side effects, rather producing drugs with natural ingredients which has no side effects so we don't need to spend more money to buy drugs to treat side effects!

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Profile picture for mistymar @mistymar

I have the same problem which is why I’m hesitant to stop medications. Did chemo because oncotype positive. Tumor marker dropped about 20 points (needed to drop 50 to hit high normal), then after 3 months started back up again almost to start level. At that point, he ordered brain MRI and pet scan. Neither of which showed new tumor growth. Then it dropped back to where it was before, then another 10 points and that’s where I sit. He said it can happen and as long as stays stable, monitor but not considered a problem. Easy to say but sits in your mind that maybe there’s a reason. And yes, I’ve read multiple articles about tumor marker specificity and that some feel they’re worthless but my doctor still uses them for monitoring and I have to feel he knows what he’s doing. I’ll look into the Pectasol (haven’t heard about that before), already researching other naturals like mushrooms.

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I hope you are able to get some answers that are helpful. It is truly a roller coaster ride, dealing with cancer and the treatment for cancer!

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Profile picture for paulinaneves @paulinaneves

Natural estrogen's blocker is suggested by NutritionFacts.org Dr Greger who is a Vegan but will you follow him using plant base food, he shows you research papers but not sure if they do trials like the pharma do when they develop drugs. Really not sure, the world is pro pharma who at the end produce drugs that save lives and makes tons of money but you have to spend more money on side effects, rather producing drugs with natural ingredients which has no side effects so we don't need to spend more money to buy drugs to treat side effects!

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Thank you for responding- we do live in a pro pharma world that desperately needs to blend with our natural health Drs hoping one day there will be drugs that help without horrible side effects -a milestone for all. a hopeful thought.

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Profile picture for penny21 @penny21

Hi MistyMar,
I feel your pain. I feel trapped by being told I must take this or one of the aromatase inhibitors (pick your poison) the rest of my life. All the side effects you mentioned, not to mention osteoporosis and linked to cardiac issues, as well. “Yes, we can delay your death from cancer, but you will feel lousy, be tired all the time and have painful side effects, but we can give you more drugs for what ails you. The cancer might not kill you yet, but the massive amounts of drugs and their side effects might. Depressing.

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I think it’s time that people were more honest - it’s often put across as ‘ take these you are ok’ far from the reality .
I certainly feel I was not given enough information and feel it’s expected of me to ‘feel ok’.

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Profile picture for mistymar @mistymar

I fully agree. I’ve always said I’m not doing the “circular medicine” - take this medication, now take this one to stop the side effects of the other one, now take this medication……. Everything here is rock vs hard place. No, you don’t have to do chemo but if you have mets in 2 years, too late to say “gee, I should have done chemo”. This is the same. I really don’t want to have to go through all this again so not sure I want to stop this medication if I don’t absolutely have to BUT there is that quality of life issue. My cancer group is saying 5 years only (claims research shows no difference between taking 5 vs 10 years) so hopefully that holds but things can change as we get closer. Luckily so far, heart tests normal and last bone scan was also normal without taking any bone meds (I declined). So I stay on the meds and try to survive all this that according to them aren’t side effects of the medication. Not sure I would survive without forums like this and knowing it’s not just me.

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I agree with all you say and I have found more sense and support from this forum than from my supposed ‘support’ agencies .

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