Nervous about switching from Letrazole to Exemestane

Hello, 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.

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

Upon switching from Letrozole to Exemestane, my oncologist suggested taking the lowest dose every OTHER day…which has worked entirely better. I still get occasional hot flashes, but the leg cramps, bone pain, mood crazy states seem to be gone. Well…mood is always an issue, but it may come from life these days; who can tell?! Letrozole was hell for me, as was another I’ve forgotten. 4 more years of Exemestane does seem possible at this new dose pattern. Don’t hesitate to change when your symptoms interrupt your life like that!!

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.

Initially 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.

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

So sorry that you are going through this. I am also taking a month off before starting exemestane. I have been on anastrozole for 1 year and 7 months. Joint pain was continuing and oncologist did not want it to affect my right hand more and my ability to exercise. However, what you are describing is worse. Have you consider anastrozole brand name? I read that some feel much less side effects from the name brand (Arimidex). I am thinking I may asked to do that if exemestane does not work for me...

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

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.