Letrozole: When will I start feeling/seeing side effects?

Posted by francine6829 @francine6829, Mar 8, 2019

I started taking Letrozole (Femura) about a month ago. When will I start feeling/seeing side effects? what are the main side effects you have? Does anyone not have any side effects?

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@mugs24cancer

I have been taking letrozole for 6 months. When I take the full dose I often have abdominal pain, nausea and heartburn...wakes me up in middle of the night. If I take half a dose I have no side effects. My oncologist says there are no studies for the effectiveness of half a dose so he does not support it. He says nausea and heartburn are not side effects of letrozole thus he referred me to a gastroenterologist. I have had several tests and my insides are fine. I am following a GERD diet but still experience digestive issues when I try to go back to full dose of letrozole. May be trying exemestane In the future as it it is the only one I have not been prescribed. My digestive issues were worse on Tamoxifen. Also was diagnosed with gastritis then. Again, could not tolerate full dose of Tamoxifen but did fine with half dose. It is so hard to know the right thing to do. Hoping you get some answers and will stay in touch.

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I have heard that at Sloan Kettering and NYU Lagonne, some doctors are experimenting with having patients take Letrozole every other day. I too am cutting my dose down - 3/4ths but think will go to half. Strange pains in ear lobes and neck.

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@sparklegram

I am currently having pain down the front part of my upper leg and severe pain in my knee. I can't sleep at night due to the pain. I'm seeing my doctor next week to see if I can get a diagnosis. I'm not sure if this is a result of Arimidex, or something else. Sound familiar to anyone?

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Yes, I couldn't tolerate the joint pain and two friends taking als had to have joint surgery.

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Just posting for balance here. I and many of my friends did not suffer significant joint pains with letrozole. I told my doctor that if I walked for 10 minutes, I had some pain, but if I kept going past, say, 40 minutes, the pain dissipated. My doc said she had heard this from other patients. I also did tai chi.

I totally respect the experience of those who had significant side effects, but for future readers or lurkers, I want to say that many of us did well with letrozole. I finished my 5 years and wanted to continue but tests showed no further benefit. I enjoyed feeling safer.

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@deluga

I have heard that at Sloan Kettering and NYU Lagonne, some doctors are experimenting with having patients take Letrozole every other day. I too am cutting my dose down - 3/4ths but think will go to half. Strange pains in ear lobes and neck.

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I had terrible joint pain with Anastrozole. My oncologist switched me to Letrozole at half dosage - my choice of a full tab every other day or 1/2 tab everyday. Shortly after I also started taking collagen supplements. I also have osteoarthritis in my knees, but with this change I am relatively pain-free suffering mostly from stiffness when immobile too long.

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I got off it after 3 days. I cheated and only took 3/4 of a pill. Made my neuropathy much worse and numbness on neck and face. It's been almost 3 weeks and the pain has not gone away. Glad though that you're able to take it.

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@francine6829

Cindy, I love your post and AGREE about the levels. How do the docs know if we are taking too much or too little. This is ridiculous. Interesting fact, my oncologist says for prostrate cancer, they do take and monitor progesterone levels. Cindy, where do you live and was it your oncologist who took the estrogen levels or a different doctor?

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francine6829 This may be a bit ridiculous but I am replying to you THREE years later. I'm sure you've moved on and figured this out by now!! Ha ha. I was distracted by my husband's serious medical issues and cancer diagnosis and am just now getting back to Mayo Connect. Sorry for not replying sooner to you and I hope you are well and coping. Hugs.

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Update: Soy and Letrozole
Although the pain from taking only 3 doses of Letrozole was getting better after 3 weeks, all at once I had horrible stabbing pains on my arms, neck, more neuropathy, and numbness. It was so bad it kept me up all night. I recently became a vegan and had just switched to soy milk and for the first time, had tofu for 2 nights in a row. (Studies have show that women who eat soy have lower rates of cancer and it's about the only food that helps with triple negative breast cancer which I hav3). Since that was the only significant change I had made in the last 2 days, I googled soy and letrozole and a study was done on taking them together. Bottom line was DON"T TAKE THEM TOGETHER!!

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@deluga

Update: Soy and Letrozole
Although the pain from taking only 3 doses of Letrozole was getting better after 3 weeks, all at once I had horrible stabbing pains on my arms, neck, more neuropathy, and numbness. It was so bad it kept me up all night. I recently became a vegan and had just switched to soy milk and for the first time, had tofu for 2 nights in a row. (Studies have show that women who eat soy have lower rates of cancer and it's about the only food that helps with triple negative breast cancer which I hav3). Since that was the only significant change I had made in the last 2 days, I googled soy and letrozole and a study was done on taking them together. Bottom line was DON"T TAKE THEM TOGETHER!!

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I wonder of the reason for avoiding soy is because it purportedly (I keep finding conflicting medical opinions) is estrogenic. Since letrozole is taken to block estrogen production, taking the two together could be counter-productive.

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@francine6829 : Not sure this will ever reach you, since your original post was years ago. I tune in from time to time on discussions regarding AI meds, and yes, there are people like me who have no issues with taking them (Letrozole). But then, I tend to not really react to medicines, generally speaking. Any pain reliever other than Aleve is pretty much useless, any OTC anti-histamine does not do much…………… so, in this instance, I DO hope that the Letrozole does work - since I can’t tell by just taking it.

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@francine6829

My oncologist put me on Femura rather than the one you are taking as studies show it has fewer side effects.

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My onc never mentioned it!! Only 3 other als which I could not tolerate... Now bc is back!! New oncologist only mentioned Letrazole!! After I have suspicious lymph nodes removed. Can't wait to start it!! Anyone have small dissection?? How bad is tube??!!

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