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How many drug holidays per year on AI drug?

Posted by lesliek808 @lesliek808, 20 hours ago

I've been on Exemestane for 3.5 years. I've had to go on at least 2 drug holidays a year (2 weeks long) just to rest my body from the muscoskeletal pain.

I'm wondering why all of a sudden my body starts to hurt painfully everywhere: hips, knees, fingers and I cannot cope. I can barely get out of bed. I've already tried Anastrazole early on and it's worst.

During these painful episodes, my oncologist lets me go off of it for 2 weeks and then resume Exemestane again.

I'm wondering what's triggering the painful episodes? Does anyone else go through this periodic muscle and joint pain?

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reflector75 | @reflector75 | 11 hours ago

I feel for you and am also asking the same question. Having been on Anastrozole for 20 months , (having had an 8 week Oncologist advised break because the back / leg pain was so severe) I suddenly developed bad hand pain in both hands in Oct. I’ve never had any kind of arthritic pain before but this made everyday tasks really hard. Have done some reading round the subject it seems it is not uncommon for new symptoms to pop up even after months or years on these drugs. I’m finding this unpredictability very wearying. Trying to carry on but seriously thinking of asking for a change when I see Onco in the new year . My worry with that is would I be any better off , or go from frying pan to fire? Good luck to all.

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engelwags | @engelwags | 6 hours ago

I've been on Exemestane for a year now, after first trying Anstrozole, then Letrozole. The Exemestane was better at first, but after about 6 months my insomnia is worse, and the joint aches in my shoulders is getting more and more intense. I've never taken a "drug holiday" - my onco doesn't encourage it. Did you actually feel better for a bit?I'd love to know.
Thanks for your post!

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lesliek808 | @lesliek808 | 3 hours ago
In reply to @engelwags "I've been on Exemestane for a year now, after first trying Anstrozole, then Letrozole. The Exemestane..." + (show)
Profile picture for engelwags @engelwags

I've been on Exemestane for a year now, after first trying Anstrozole, then Letrozole. The Exemestane was better at first, but after about 6 months my insomnia is worse, and the joint aches in my shoulders is getting more and more intense. I've never taken a "drug holiday" - my onco doesn't encourage it. Did you actually feel better for a bit?I'd love to know.
Thanks for your post!

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@engelwags YES, I do feel better after stopping for the 2 weeks.

I just have to rest from the medication and it seems like all the joint pain and insomnia resolves itself by the end of the 2nd week. When I am in that state of extreme pain, I can't function or think. All I want to do is curl up and stay in bed.

That's interesting that your oncologist doesn't encourage it. It's not like you're not going to go back on it.

I am ER+, PR-, HER2+ - I've read that PR-, HER2+ is more aggressive, so that why I have to get back on it after the drug holiday. If that wasn't the case, I would have stopped Exemestane a long time ago.

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lesliek808 | @lesliek808 | 3 hours ago
In reply to @reflector75 "I feel for you and am also asking the same question. Having been on Anastrozole for..." + (show)
Profile picture for reflector75 @reflector75

I feel for you and am also asking the same question. Having been on Anastrozole for 20 months , (having had an 8 week Oncologist advised break because the back / leg pain was so severe) I suddenly developed bad hand pain in both hands in Oct. I’ve never had any kind of arthritic pain before but this made everyday tasks really hard. Have done some reading round the subject it seems it is not uncommon for new symptoms to pop up even after months or years on these drugs. I’m finding this unpredictability very wearying. Trying to carry on but seriously thinking of asking for a change when I see Onco in the new year . My worry with that is would I be any better off , or go from frying pan to fire? Good luck to all.

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@reflector75 I totally understand. Please ask for another AI drug. I felt terrible on Anastrazole.

Right now, we have to just be flexible and see if there are other options for us.

Also, there's Tamoxifen which works in a different way stopping estrogen. Although not as good as the other drugs stopping estrogen, that may be an option too.

I am 62, very close to 63, but I feel like I'm 90, when these muscoskeletal pains flare.

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