I'm going to stop taking Letrozole, anyone else do so?

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sweetp6217
sweetp6217 Member Posts: 365
edited February 2020 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

Hello all,

I am at my whits end about these side effects, most of which I have. I have an appointment this coming week with my MO and I am going to let her have it! All doctors say, "keep taking it, we'll take care of the side effects". WRONG, well, mostly wrong. For a month or so, I won't be taking the med. Anyone else try that to see if some of the SE go bye bye?

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  • sweetp6217
    sweetp6217 Member Posts: 365
    edited February 2020

    Well, my first post was a bit wordy and I have since stopped taking Letrozole. I had begun taking it almost 2 years ago and my MO agreed that I should try not taking it for a while. In the meantime, I have a bone scan coming up. Here's hoping that some of my SEs from taking letrozole disappear.

    At least my MO accepted the copy of an article about a recent study :"Predictive Biomarkers and Novel Therapeutic Strategies in Oncology" Contrary to the commonly held view, 2 years after diagnosis, hormone therapy, a highly effective breast cancer treatment worsens quality of life to a greater extent and for a longer time, especially in menopausal patients.

    I'm curious if anyone else has tried not taking letrozole and if it helped.

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  • LimnoGal
    LimnoGal Member Posts: 157
    edited February 2020

    sweetp-after 3.5 years, I have quit letrozole because of side effects. Mostly quality of life issues (weight gain, foot pain, hair loss, change in body odor). At my MOs request, I tried exemestane for two months. I stopped gaining weight and the hair loss slowed considerably. My husband doesn't complain quite so much about the change in body odor. But the foot pain remains. I know the foot pain is from the AIs because it went away when I took an MO-sanctioned vacation from them.

    I am currently taking a month long vacation from all meds, then will try a month of tamoxifen. Different mode of action, different side effects?

    If the side effects are tolerable, I'll stick with it. If not, I'm done.

    Good luck with your decision!

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  • sweetp6217
    sweetp6217 Member Posts: 365
    edited February 2020

    Thank you LimnoGal,

    Sorry that you had side effects. Mine are neuropathy, bone/muscle/tissue pains, numbness in extremities, weight gain, ringing ears, cognitive issues, etc. Some of those may not be related to letrozole.

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  • dtad
    dtad Member Posts: 2,323
    edited February 2020

    sweetp6217...I might have already said this in an earlier post but I'm so sorry you experienced such severe side effects from Letrozole. QOL does matter. Its a very personal decision and I respect all made. Only you can know if or when its time to stop. I have an autoimmune neuropathy not related to BC. My neurologist told me that neuropathic pain is the worst pain there is! So I get it! Feel better...

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