Connect
Nervous about switching from Letrazole to Exemestane
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Breast Cancer Support Group.
Connect
I am sorry you had such a bad Charley horse from that med. I have been on Letrozole since last November. It has caused bad joint pain and a trigger thumb that I will be having surgery on. I was going to try another one but am afraid of what it may cause. The one you said caused you such pain, I had heard from someone else they did better on. I guess it is individual how people respond. I use a frankincense salve that has helped my knees som. My hands are still very stiff and painful. Best of luck to all facing these issues.
-
Like -
Helpful -
Hug
4 ReactionsThank you so much for the suggestion of magnesium. I have taken, will keep trying. I'm so happy that you have remained cancer free all these years, you're right, despite the SE's, we are lucky to be able to take medication which helps keep us cancer free.
-
Like -
Helpful -
Hug
3 ReactionsInitially started on Anastrazole. After about 8 months, the muscle and joint pain and leg cramps were taking its toll - not debilitating but constant, just moved around (today the left ankle tomorrow right hip and thigh). Electrolytes helped with the cramps. Oncologist took me off meds for a month and then started exemestane. Did fine till started 3rd month - then weight gain (10# in 1 week with no dietary or exercise changes), then fatigue set in. Initially not bad - might nod off after lunch or would have to take a nap a couple times a week. At visit 5 months in, he mentioned I “looked tired” and I told him I was - all the time. Asked if I was depressed (don’t really think so). 2 months later, he ran extra tests for fatigue and all was normal but this had progressed almost to an inability to function mid day, multiple “naps” (in quotes because don’t usually go to sleep, just lay there and try to relax - it’s more of a whole body fatigue if that makes sense). Now from 8 - 10 months in, I can’t sleep - lucky to get 3-4 hours a night which makes the fatigue even worse. I do have some muscle cramps but not excessive or severe. Having trouble getting exercise both because now have to talk myself into it and because I get tired and winded halfway through. So I think my side effects are - hot flashes/sweating, extreme fatigue, insomnia, hair loss and weight gain. I think it’s the exemestane but a) none of them do. They just keep pushing anti depressants and b) only thing left is letrazole and it may be worse. Or try Anastrazole again and live on pain meds but maybe without the other side effects.
Like several others here, I’ll continue because don’t feel I’m comfortable with stopping the meds and hope I survive the next 3 1/2 years.
-
Like -
Helpful -
Hug
4 ReactionsBest of luck to you with your surgery! I have had trigger finger too while on the letrozole. And I have heard too that some ppl seem to do better on the exemestane. Please take care, and thank you for supporting my question. xo
-
Like -
Helpful -
Hug
1 ReactionYes I got it from All the meds and it turned out to be Achilles tendinitis. I think the meds aggravated my weakened condition flaring it up. Got some therapy. Look up some stretching exercises!
-
Like -
Helpful -
Hug
3 ReactionsTo 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.
-
Like -
Helpful -
Hug
4 ReactionsHello, again! Thanks for your reply! What did you do about your trigger finger? Did it get better once you were off Letrozole? Did you have cortisone shots or surgery? Interested to hear. 😊
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.
-
Like -
Helpful -
Hug
4 ReactionsMistyMar, mind if I ask your age? I turn 70 next week and have stage 4 BC that had metastasized to my lymph system and bones.
I just turned 73. Have read that a lot of women that are older are choosing not to take these meds. But tumor markers have never gone to normal so I’m not comfortable stopping. Figure I got through surgery, chemo and radiation and can’t stop now.
-
Like -
Helpful -
Hug
1 Reaction