Has anyone tried anastrozole or exeme... - SHARE Metastatic ...

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Has anyone tried anastrozole or exemestane?

Georgelila profile image
18 Replies

Hi all! Until I read your posts about side effects of Letrazole I finally realized I’m living with these same muscle and joint aches in my legs. I’ve always been very fit and active and this year tore my plantars fascia (boot for 3 months) and during a Pilates class did something to strain my hip flexor and 2 weeks later it still hurts!! So a lightbulb came on while reading these posts- it’s the Letrazole!

My doctor said we can consider either anastrozole or exemestane - had anyone used these and were the side effects better?

Thank you so much for your guidance , this site has made me feel so much less alone since my diagnosis in May 2020 .

Hugs,

Elizabeth

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Georgelila profile image
Georgelila
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18 Replies
TNVol profile image
TNVol

I took exemestane with Ibrance for about two years with minimal side effects.

Georgelila profile image
Georgelila in reply to TNVol

thanks for this . Very encouraging. It sort of snuck up on me as about 6 months ago I could still run 5 miles and now I’m hobbling around like an old woman. Thanks again for responding!

Bettybuckets profile image
Bettybuckets

hi Elizabeth,

I’m on exemestane right now and was on letrozole in distant past for 6 years. I used to be the sales rep for exemestane made by pfizer. All 3 aromatase inhibitors cause the arthralgia like pain that you mention. I am creaking around too. Hard to know what is the MBC and what is the side effect!

Georgelila profile image
Georgelila in reply to Bettybuckets

ah thanks for this, knowledge is power .

Nocillo profile image
Nocillo

I was on Anastrozole and fulvestrant for 5 1/2 years. No problems.

Ursula_I profile image
Ursula_I

hi,

I was on Exemestane for five years and didn't have any side effects.

Best,

Lucy

love2golfwell profile image
love2golfwell

I'm so sorry you are dealing with this pain. I was on Arimidex (the generic of Anastrozole) for 5 years when I was first diagnosed with Breast Cancer. I experienced hot flashes and joint pain while on it but I was in remission during that time so I tried to deal with the side effects. I was still able to be active, play golf and exercise. It seemed that the pain would be mostly in the morning and after I was up and moving, it did not last. I wished I could have stayed on it longer as I was diagnosed with MBC 2 1/2 years after I went off of the Arimidex. If the Letrozole is causing that much discomfort, it might be worth trying the Anastrozole. Best wishes, sending hugs.

Georgelila profile image
Georgelila in reply to love2golfwell

thanks for this . Got to keep moving !

CTGirl1962 profile image
CTGirl1962

I was on Letrazole for 7 years the first time…the side effects subsided after about two-three years, but maybe I got so used to them that it just didn’t bother me anymore.

My doctor put me on Anastrozole this time around and it’s sooooo much better!! Very little joint pain (just some in my hips). For me, it’s definitely more tolerable. ♥️

Lakincaid profile image
Lakincaid

I think everyone has a different experience with each of these medications. On letrazole now and doing ok, but absolutely could not tolerate anastrazole. I was hobbling around and so stiff. I think if your doc is ok with it another med would be good to try. Best wishes ❤️

TammyCross profile image
TammyCross

I see the answers are all over the place. I guess you have to see how you do.

I started on letrozole. Really bad hip pain. Switched to anastrazole -- the generic for Arimidex. It was better at first, but it built up. I take it at night and during the night, it really hurts to roll over in bed, can hardly lift my knees. When I get up, I hobble. Tried Arimidex, thinking the side effects might be less with the purest formulation, but it is apparent that it is the essential ingredient, the AI, in all of these that causes the problem, so back to the generic, much less expensive.

So my experience is that anastrozole is somewhat better than letrozole, but hardly pain free. It does wear off during the day. If I have to get dressed in the morning, it is a struggle. Sometimes that makes me angry, sometimes sad. If I can wait until mid-day, I can get dressed without sitting down and lifting my legs with my hands.

My second opinion doc said she would have gone to exemestane before letrozole because side effects are less. But some here have bad side effects with exemestane. Maybe you will be lucky and have fewer side effects with one of the others.

Lavern2 profile image
Lavern2

Hello. I take Letrozole been on it since June. I too have joint pain and just found out this medicine is why I'm gaining weight. Just blowing up like a balloon 🎈and I get short of breath. I'm going to see if I can do some other medicine when I see my oncologist next month before I swell up like a whale. Prayers for your healing.

Georgelila profile image
Georgelila in reply to Lavern2

thanks for this - I feel the same way - gaining weight like crazy. Hugs to all

Birthday2018 profile image
Birthday2018

I'm on anastrazole and have been since 2019. Lots of aches and stiffness but exercise does help. Don't think any of these medications come with no side effects x

OneLump22 profile image
OneLump22

I was on Eximestane for a while. I don't think I had any side effects (that I noticed that is), however, my Once had to sitch it out cause it wasn't stopping my ter growth. Now I'm on Ibrance.

Cowgirl1951 profile image
Cowgirl1951

I was on Exemestane for 9 years with no side effects. If that is the one you go with I hope it works as well for you as it did for me.

Dflur profile image
Dflur

I have been on anastrozole for almost 4 years and it does give aches into my legs…

Onesource profile image
Onesource

Hello! I was diagnosed once again after 25 years in 2021. I did a year's treatment at MDAnderson Cancer Center and they saved me once again. I won't tell you it was easy. They tried 3 different types of really strong chemo to get things under control so they could operate. The cancer spread to all my lymph nodes under my left arm (I had the right arm lymph nodes removed during previous cancer in 1995). The Letrozole was no problem but as you will read in other posts here, the Ibrance is pretty terrible and few people tolerate it for very long. I left MDAnderson after my treatment over a year ago and have only been on Exemestane - 25mg. in the morning. That's it! I know they know what they're doing at MDAnderson. So far, my scans are completely clear. I go back for scans and bloodwork every 3 months. They want to catch anything early! I feel very blessed. I haven't read about anyone else who is taking exemestane just by itself. I like to believe that it's a mighty little cancer pill doing its job!

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