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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@vtgal is there any other possible explanation? Other health issues, other meds? That is strange, as I said, but sorry you have gone through this.

My health is very fragile in a lot of ways but I did okay with letrozole. And I felt safe while on it. Sorry the same wasn't true for you.

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@californiazebra

Since everyone reacts to meds differently, it might be worth trying letrozole. You can always stop it if you don't feel the side effects are worth it. I've been taking it for over 2 years, but I've also been taking Kisqali and Octreotide (for a different cancer) at the same time so it's hard for me to pinpoint which side effects are from which med. So far, I've decided all three meds are worth it. Best of luck to you.

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Thank you. I find out what my plan is after May 16 when my oncotyping should be finished. Letrazole keeps coming up for me….like intuitively, strongly…..I pray it is something that will work with my body.

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@coldia

Thank you for your reply. I don’t remember seeing an Oncotype just that it was grade 2.

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Usually oncotyping informs whether chemo is a good option…vs risk of recurrence etc.

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when I was going through the four drug choices, my oncologist finally put me on a pure AI, no fillers. It isnt covered by medical but I had no side effects. I ended up going off all of them, but that might be something to discuss with your onco. It is the fillers that are so hard on the body. I had too much damage by the time I got there, and gave up all. I am 3 years clear.

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@jeaniebean

when I was going through the four drug choices, my oncologist finally put me on a pure AI, no fillers. It isnt covered by medical but I had no side effects. I ended up going off all of them, but that might be something to discuss with your onco. It is the fillers that are so hard on the body. I had too much damage by the time I got there, and gave up all. I am 3 years clear.

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That is such good news that you are 3 years clear! I had heard someone else suggesting using AI’s with no fillers and asked my oncologist about that and he said he hadn’t heard of that🤦🏻‍♀️
Wishing you continued good health.

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@coldia

That is such good news that you are 3 years clear! I had heard someone else suggesting using AI’s with no fillers and asked my oncologist about that and he said he hadn’t heard of that🤦🏻‍♀️
Wishing you continued good health.

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I used brand name Femara (letrozole) because I react to fillers. There is one generic I found at the end that was tolerable but too late! Brand name was expensive but it was worth it for me. I am 8 years out now.

I don't know if compounding is possible but that is often a route for folks who are sensitive to fillers for meds that the compounding pharmacies are able to do.

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8 years out is wonderful!! Wishing you continued good health☺️

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@coldia

That is such good news that you are 3 years clear! I had heard someone else suggesting using AI’s with no fillers and asked my oncologist about that and he said he hadn’t heard of that🤦🏻‍♀️
Wishing you continued good health.

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Mine shyed away from it in the beginning but I had done a lot of research and had her cornered. She finally did it, and it is important that she write in the prescription, no fillers, or it wont be covered by your medical. I still had to pay quite a bit but it was so much better,. She finally admitted it was too bad that the government only used and covered the cheaper brands. I now stay away from ALL drugs.

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I had horrible side effect from letrozol - TN, a type of neuropathy and stopped taking it. I'm told neuropathy is a more common side effect in older women. After 6 months, it's decreased significantly but still has not gone away. Talk to your doctor about starting if you decide to do so with either 1/2 dose or every other day. Good luck.

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the neurologist I saw after getting AI induced neuropathy in my feet told me that "drug-induced neuropathy does not heal." It's been 20 months since I quit AI meds (I tried letrozole and anastrozole) and I still have neuropathy,

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