Decision about Letrozole

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.

I took letrozole for 5 years without significant side effects. It is possible that the people who don't have side effects, don't post as often.

In one test, I was told a risk of recurrence of 5.7% was "high. A reduction of risk of 5-10% seems quite significant.

Did you have an Oncotype for DCIS? What did it tell you?

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

I don't feel you can make an informed decision without knowing your Oncotype. You can ask for the report. It will give you an Oncotype score, your ER and PR score, whether you benefit from chemo (with chart over time) and risk of recurrence with hormonal therapy assumed (tamoxifen so an AI is a little better , most likely).

Doctors tend not to go by grade anymore. I was grade 3 and other nasty stuff but low Oncotype. If you ER is highly positive then letrozole will signficantly decrease risk and in general we are told that these meds cut our risk in half.

@coldia: I have been taking Letrozole for about 2 years now. The first 4 - 6 weeks I had some moderate joint pain in my hips, but since then I have no side effects at all.

I had terrible side effects from Letrozol. I stopped taking it after about 3 months and decided against trying any other drug. The side effects did not go away after stopping.

@vtgal how long ago did you stop? It is strange that side effects continued since your estrogen level should have returned to pre-medication level. I wonder what your doc says...

It’s been about two years. I believe my neuropathy was triggered by the letrozol. That didn’t go away. I have gone down hill since taking it. I have major fatigue, sleep issues, joint pain, etc.

Is there any routine test to measure the side effects?

I don’t think there is, or needs to be, a test. An individual’s reaction cannot be predicted. The most common side effect, from what I understand, is hot flashes. Also, bone/joint pain, trigger finger……….
A pharmacist told me that based on her clients, some never have any side effects, some people have them on and off, in some cases these don’t manifest themselves until a few years after the start of Letrozole. And some people simply cannot tolerate whatever side effects they experience. It seems to be a matter of luck, perhaps.