Letrozole later onset side effects

@charlesgreenberg I was on Verzenio but could not keep it down. At $8,400 a month throwing it up was not acceptable. Now on Kisqali and still getting use to it. I was on Anastrozole and had wild mental swings. Now on Letrozole. Trying to manage and get the right mix is a full time job. I am very honest with my care team - which are wonderful. I find that the medication can be more difficult than active treatment. Best wishes.

@ccc1965 I was initially on anastrazole, and switched to letrozole. I agree 100% about the medications being more difficult than active treatment. It is unrelenting with side effects and last for so many years. Stay strong!

Just recently diagnosed with an Invasive Ductal Carcinoma, small, Stage 1, ER+/PR+ and HER-2 negative.
I also was just recently diagnosed, and have a Carotid Body Tumor/Paraganglioma (welcome to the PARA Club)
in my right neck, that is under constant surveillance. My H&N Surgeon let my Breast Team know that it is fine
for me to undergo General Anesthesia to have a lumpectomy, as that was their concern with this option on the tumor, 7mm. Other options are cryoablation, with radiation and Letrozole for 5 years! or just Radiation with the Letrozole for five years. Two previous lumpectomies, atypical ductal hyperplasia and papilloma, and recent basal cell Mohs Surgery. Anyone with Paraganglioma or breast cancer with a mutation in our TP53 gene? Thank you!

@ccc1965

Oh my how true that the aromatase inhibitors can be more difficult than actual treatment! I hope what you have now will work for you!!!

After double lumpectomy, chemo and radiation I then started Letrizol. Oh my body aches, joint pain so difficult. So I switched to exemestane…. getting off of that! Gastrointestinal problems galore! I’m going back to Letrizol. I will take joint pain over joint pain and constant diarrhea anytime!

But I have another 8.5 years on hormone blocking drugs so we shall see. You take good care, thinking of you!! xoxo

@louisewalters I also had a Zometa infusion in October 2025. My PA initially ordered another infusion 6 months later but I've postponed that until I meet again with my endocrinologist.

Did your oncologist tell you why s/he recommends the Zometa every 3 months for 2 years? I think it is prescribed when cancer is found in the bones, but wonder if they are recommending this schedule to prevent it from developing in your bones. I'm going to ask my oncologist this question at my next visit.

So sorry to read that you are experiencing these side effects with Letrozole. I have been taking it for 1 and 1/2 years. Want to respond to the problem with dry eyes which I’ve had since starting the medication. You probably already do this, most people seem to, but I have increased my fluid consumption and that seems to have helped. I’ve noticed so many carrying water bottles so took a clue from that. I’m elderly, should know better, but think several weeks ago I became slightly dehydrated.
Sincerely hope you can resolve or diminish some of your other symptoms. It’s a struggle.

@prarysky When I was initially diagnosed the oncologist told me she didn’t want the cancer to spread or come back and was going to throw everything at me. My understanding with Zometa is that because the letrozole can cause osteoporosis and is hard on our bones, we are given Zometa to prevent that from happening. However, Zometa also has very scary side effects if you google it. All of these drugs are so hard on us! I am in Canada and I wonder if treatments vary country by country. Best wishes!

@claunch Thank to for this. I also don’t seem to ever drink enough and what
you say makes sense. I’ll give it a try. More fluid!

@louisewalters Thank you for this additional information. Because my breast cancer was grade 3 so considered aggressive, my oncologist may also want to use frequent Zometa infusions as a preventive measure. BUT....as you note, Zometa carries its own side effects and it's my understanding these increase with frequent use. It's a tough path going forward. I'm trying to find a balance between risk and over-treatment.

Wish oncologists would test to see if cancer cells develop in bone tissue at an early stage. Liquid biopsies might show circulating cancer cells but my oncologist here does not recommend their use with early stage breast cancer. The problem is that even if you found such cells, would you treat differently? And the answer given is no.

But I beg to differ because I think should such cells be found, even if the treatment remains the same, more surveillance (e.g., CTs, PET Scans) could be done. On the other hand, I am certainly no clinician and admit this is all complicated and certainly outside my wheelhouse.

I think there are studies looking at the effectiveness of these liquid biopsies in metastatic breast cancer. Possible use in early breast cancer is down the road.

I'm going to see what my endocrinologist says about recommendations for Zometa infusion scheduling.

Based on your description, it sounds as if the treatments are the same in Canada and US if you have a diagnosis of estrogen positive Breast cancer and are on an aromatase inhibitor.

Hope things go well for you!! Best wishes for good health!