1. < Breast Cancer

Decision about Letrozole

Posted by coldia @coldia, Apr 27, 2023

I met with my oncologist today and he suggested I start Letrozole. Over a 20 year period I have had 3 surgeries and a total of 4 DCIS stage 0 breast cancers. I asked what are the percentages this drug would do to protect me from recurrence and he said 5 - 10 %. I was surprised at this. This percentage seemed so low to risk all of the side effects I have read about here and heard about from other sources. I took tamoxifen for about 3 years until my joints started to bother me and went 16 years before my next diagnosis so it probably should be an easy decision but I am worried about the many side effects so many are dealing with. I am wondering if anyone who started AI’s and had to quit due to joint pain or other effects if the issues you had went away after stopping. My pain went away after I stopped tamoxifen but I was 20 years younger and it was a different drug.

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timely | @timely | Feb 7 9:18am
In reply to @ppat4pr "I have been on letrozole for about 5 1/2 years now. I am experiencing extreme dizziness,..." + (show)
@ppat4pr

I have been on letrozole for about 5 1/2 years now. I am experiencing extreme dizziness, loss of hair, dry eyes, etc. They are all side effects of letrozole and I am going to stop the medication.

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@ppat4pr

What decision did you reach with the Leterzole and do you still have the dizziness?

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1 reply
ppat4pr | @ppat4pr | Feb 7 11:46am
In reply to @kpederso "I'm sorry that you have gone through all this crap, you're brave & gave it your..." + (show)
@kpederso

I'm sorry that you have gone through all this crap, you're brave & gave it your all. I'd stop taking it too. I hope there's something else for you to take. Take care of yourself

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Thank you very much

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ppat4pr | @ppat4pr | Feb 7 11:47am

Thank you very, very much.

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mvg | @mvg | Feb 7 12:42pm
In reply to @mvg "I am 18 months clear and taking Letrozol. I would not have thought I had any..." + (show)
@mvg

I am 18 months clear and taking Letrozol. I would not have thought I had any side effects until reading these comments. I DID develop have severe trigger thumb issues and some joint pain that I never had before. After PT did not help at all, I decided to treat them with over-the-counter arthritis meds that have made a huge difference. Naturally, I've been thinking the problem was arthritis. Never thought about a Letrozol connection. I will talk to my oncology team about it.

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Absolutely. I had the exact same issue and thought process. Same attempt with PT. Same relief from trigger thumb with MOVE FREE ULTRA.
mvg

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ppat4pr | @ppat4pr | Feb 7 7:43pm
In reply to @timely "@ppat4pr What decision did you reach with the Leterzole and do you still have the dizziness?" + (show)
@timely

@ppat4pr

What decision did you reach with the Leterzole and do you still have the dizziness?

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I stopped taking after 5 years. My doctor agreed. I still have dizziness which probably is an inner ear condition. Am always dizzy. No vertigo though.

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deluga | @deluga | Feb 12 4:58pm

I've never recovered from just taking Letrozole for a very short period of time. If you decide to take, I'd suggest you take it only every other day. There's no difference in survival rates between those who take every day and every other day. It's there in the research. Good luck.

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mcgeehin | @mcgeehin | Dec 9 6:06pm

What was your reaction to coming off Letrozole? Did you have any side effects?
Also. Anyone know how long it takes for hair loss to stop and for bone loss to stop?

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1 reply
jnorki | @jnorki | Dec 10 2:32pm

I just stopped Letrozole 12 days ago due to debilitating muscle an joint pain. I also have severe neuropathy in my hands. So far - no improvement in pain but hoping it is early days and these side effects will resolve over time. Oh, and my hair - soooooo thin, lost so much. Hoping my hair grows back as well.

It was a very toxic drug for me. Not taking another for along while if ever.

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elizabet | @elizabet | Dec 12 12:24pm
In reply to @resort "Is there any routine test to measure the side effects?" + (show)
@resort

Is there any routine test to measure the side effects?

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Great question!

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rosa1935 | @rosa1935 | Dec 13 5:57am

I was 69 when I started Anastrozole. This medication ruined my joints and I have very bad back
Pain when I’m walking. I stopped Anastrozole july 2023 and started Exemestane. I still have side affects and only take it every 2 days. I stopped taking it fir 6 weeks back beginning of its day I couldn’t believe how well I felt. Still had back and joint pain but I wasn’t out of breath as I used to b. I restarted it and tge side effects are bad again but breathlessness and palpitations. I’m afraid to stop it completely. I will have a mammogram next May and then will make a decision as to stopping it or continuing. I’ll b 4 years on it them. And I’ll b 73 in April. Best of Irish ☘️ luck to you and merry Christmas and happy new year 🥳

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