Decision about Letrozole

I am so sorry to hear that. It just seems that it really is a “roll of the dice” and everyone reacts differently. I just don’t know if I want to go down the road of chance. As long as they keep catching it early, and thankfully mine doesn’t seem to be the aggressive type, I’m wondering if the better road for me would be to not try the AI’s at least for now or try to visit another oncologist and see about the “no filler option” if they have heard of that since this last one didn’t. Sending healing thoughts your way.

Just get a "no substitution" prescription which means brand name. Or try a few generic brands. Some are tolerable, some aren't, for each of us.

Many many people take AI's without significant side effects. It is understandable that people with serious issues from the meds, post. And I am sorry for people's challenges. But it can be misleading.

If your Oncotype and/or doctor tell you that an AI will substantially reduce risk of recurrence, I hope you will give them a try. And that means giving them some time because side effects like hot flashes may ease up.

I am very sensitive to meds and have a long list of health issues, but have to say that of all the meds I have tried, the AI I took had the least side effects. That's me. I would also have endured more side effects to avoid more cancer.

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.

I’ve been on Letrozole for 8 moths and didn’t seem to have side effects. But it has stopped working for me already! My bone and lung mets have shrunken or gone but liver has uncountable - as they call it - new tiny lesions. Waiting to hear what next.

@resina sorry you are dealing with stage 4 and hope docs find a treatment that works!

@vtgal -- my three cancer meds including letrozole have made my neuropathy a bit worse, but not enough to make me stop taking the meds.

Also, I've had adverse side effects to other meds that did not stop until weeks or months after I stopped the med. Doctors would usually question that and mention the half life of the med, but clearly the med triggered another issue that was now ongoing even after the med wore off. Neuropathy can certainly be one of those things.

I am prone to lots of adverse reactions to meds and since I can tolerate letrozole, I'm very hopeful for @coldia. 🙂

What are you taking?

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.

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

@ppat4pr at the five year point I had a test called the Breast Cancer Index that showed whether there was any benefit in doing more than 5 years, and also risk. My risk was high but there was no benefit from doing more letrozole. This test is now in the NCCN guidelines. I had to tell my doctor about it. Maybe it would help you feel good about stopping!