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Stopped Letrozole this week, how long before side effects go away?

Posted by lsouth56 @lsouth56, May 25 11:54am

With support from my oncologist, I stopped Letrozole this week after 2 1/2 years. I literally could feel my vitality being sucked out of my body and the pain in my joints and bones are no joke. I have had two knee injuries in the last 6 months that feel caused by weak muscles/tendons/ligaments.

I know there are similar stories, my question is if you experienced this type of side effect and stopped taking Letrozole, how long did it take (if ever!) for them to stop? Did you regain strength afterwards?

Thanks for feedback, folks. Hang in there!

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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wsd52 | @wsd52 | Oct 22 7:53pm
In reply to @buckokey "@flowergal I’m having some strange things happen and hard to know if it’s the letrozole or..." + (show)
Profile picture for buckokey @buckokey

@flowergal
I’m having some strange things happen and hard to know if it’s the letrozole or the fact this BC/lump started over two years ago but doctors failed me by not pursuing (taking biopsy) until May this year. I’m 78 and sometimes feel no one cares after you hit a “certain” age.

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@buckokey I know what you mean and agree!
That’s why we need to stay in behind them and
learn things along the way to help and fight for ourselves!

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jardinera25 | @jardinera25 | Oct 23 6:53pm
In reply to @keywestsj "I'll be 80 in 2 months and supposed to start taking Letrozole after radiation. I'm thinking..." + (show)
Profile picture for keywestsj @keywestsj

I'll be 80 in 2 months and supposed to start taking Letrozole after radiation. I'm thinking about refusing to take it. I have other issues(Afib for one) from what I've been reading about side effects I thinking I'll just take my chances and pray. Does anyone here wishes they had never taken this drug? Any imput or advice would be deeply appreciated.

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@keywestsj , yes, I wish I hadn't taken it (I'm 75). I with my Doc had done a little more research on using it if you have cardiovascular disease. I had moderate Hypertension, and now because of going on Aromatase Inhibitors, I now have nasty Labile Hypertension, which may never get better. I'm now on Tamoxifen. Here's a source warning if you have CVD: https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.119.044750

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keywestsj | @keywestsj | Oct 23 8:01pm

I appreciate your response. I have heart issues (afib)that I don't think will be good for me to take this drug. I just wish that I could get advice from the medical community. My cardiologist is hesitate to tell me truthfully what she thinks because of the oncologist. It's just so difficult to make the right decision.

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luckbme | @luckbme | Oct 24 11:43pm
In reply to @cat168 "I took anastrozole for 7 months and had to stop the side effects were so bad...." + (show)
Profile picture for cat168 @cat168

I took anastrozole for 7 months and had to stop the side effects were so bad. I waited a month and started exemestane which I took for a month and now I’m taking a break before starting Tamoxifen. Hopefully that works.
If it doesn’t I’ll look into DIM. My oncologist said it could supplement an AI or amoxicillin, but not to use it alone.

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@cat168
What is DIM?

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luckbme | @luckbme | Oct 25 12:05am
In reply to @jardinera25 "@keywestsj , yes, I wish I hadn't taken it (I'm 75). I with my Doc had..." + (show)
Profile picture for jardinera25 @jardinera25

@keywestsj , yes, I wish I hadn't taken it (I'm 75). I with my Doc had done a little more research on using it if you have cardiovascular disease. I had moderate Hypertension, and now because of going on Aromatase Inhibitors, I now have nasty Labile Hypertension, which may never get better. I'm now on Tamoxifen. Here's a source warning if you have CVD: https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.119.044750

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@jardinera25
I don't want to disenchant you and everyone is different. But I have CVD and my doctor put me on tamoxifen. I am disappointed in myself for not questioning my doctor more on details. I took it for 10 weeks and was miserable for 10 weeks, all day long, 24/7. After doing research (too late) I believe I should never have taken it in the first place. I'm 86. I found another oncologist and his percentages of what would happen if I didn't take tamoxifen were the opposite of my first oncologist. I am still having side effects after stopping the pill about four months ago, although they have started lessening gradually the last four weeks. I am convinced they are never going to completely disappear and these episodes are severe, just not all day long. I'm angry with myself for waiting so long to research and angry with that first oncologist for not looking closer at my health records. I wish you the best and will keep you in my prayers jardinera.

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cat168 | @cat168 | Oct 25 8:05pm
In reply to @luckbme "@cat168 What is DIM?" + (show)
Profile picture for luckbme @luckbme

@cat168
What is DIM?

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@luckbme
I don’t know much about it, but I’m running out of aromatase inhibitors I can take so I’m trying to find options. It’s a non-traditional medicine supplement. I think it’s naturopathic. It’s called diindolylmethane, DIM for short.
There are discussion groups on the web about it.
My oncologist told me not to give up on AIs, and said he didn’t know about DIM but that I could take it.

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