After 10 mths on Letrozole I started having mild but annoying left fla

I would honestly tell your medical oncologist and also see an orthopedic doctor.

Letrozole is the strongest AI and causes muscle and joint damage.

You need to be checked out.
I had to stop Letrozole because of this.

I have been on letrozole for 9 months. I have some joint pain in hips and knees. I find exercise helps - primarily stretching and then moving. I ride an indoor bike and walk and do yoga. The cold weather makes it worse. I have been told once your body adjusts it gets better but I don’t know. I have good and bad days so the discomfort seems to come and go. I know Letrozole is the best AI for invasive lobular cancer.

I would encourage you to discuss it with your oncologist to see if they think trying a different AI would be in your best interest.

@timely will do soon! Afraid to switch to another drug but I can’t deal with this for 3-1/2 more years!!

@wews doc wants to take me off Letrozole for 2 weeks but is that even long enough? Not sure what to do walking seems to help also trying yoga to see if that helps! I’m not young but feel about 95 right now! lol thanks for info

I completely get it. I feel the same way. Some days I am so stiff and my joints hurt. My oncologist really wants me to stick with letrozole if I can but I am going to speak with her this month about alternatives. I am 70 but am so stiff when I get up sometimes I feel 90’too. I just want to make sure that it doesn’t continue to get worse since I have to be in this for another four years and three months. I do know women who have switched to a different AI after taking a break for three weeks. It’s too soon for them to tell me if it has made a difference yet. I think doing gentle yoga and stretching and movement does help so maybe try it and see if it helps you.

@wews

My medical oncologist who just retired said that I could not take 1) tamoxifen as I was at risk for blood clots.
2) I can’t take Anestrozole as I had a severe allergic and rare reaction with it with one tablet.

Both legs tingled at muscles both above and below outer legs for 20 seconds and then both legs gave out entirely. Grabbing onto the bathroom sink save me from falling. Next day my pulse was 150
with a 20 ft. walk . Told to stop.
3) Letrozole destroyed the muscles and joints in my legs after 2 1/4 years.
With both legs, the muscles would give out at any time.
Reached a point at Orthopedic urgent care where I could not walk.
Was taken off Letrozole for a months in July because of this and at Urgent Care at end of September.
Have lost muscle strength in both legs and have to have Total knee replacement surgery in both legs.

Need to build up muscles both before and after surgery.

Was supposed to go on Exemestane in October.
Both retired medical oncologist and new one advised against that.

Choice was to be in a wheelchair and not able to walk, risk of carpal tunnel syndrome and hand arthritis with taking Exemestane and being totally immobilized and in pain from AI and knee osteoarthritis or being able to walk.

Crazy choices….But what good is it to further destroy your muscles and bones in knees and perhaps hands with Exemestane or at least be able to walk and have some quality of life and not depend on others?

I see new medical oncologist this month to see what safety plan I can be given.

I have PLISC stage 1B and am at the 3 year mark of surgery.
It is pre-cancerous and rare.

@beezyb One needs to take a 1 month break from Letrozole to get back to normal before going on another one.

At the 8 day point some symptoms are gone.
But your body needs complete recovery before going on another AI.

@wews thanks I am 73 and feel 90 when I wake up. Once I move around it gets better my oncologist also wants me to stick with Letrozole but ai have 3-1/2 more years not sure I can stand it for that long

@timely sigh The PA I talked to told me it may take longer not sure what to do it’s not terrible but annoying muscle back pain daily. Switching to another AI could be better or worse guess I have to decide soon

@timely my knees shoulders lower and left side of back hands wrists hurt 24/7z I haven’t had the knee problems so far but only on AI 1-1/2 years so far. Choices are hard!!!