IBC: Letrozole longer than 5 years?

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trudy-erl
trudy-erl Member Posts: 38
edited February 2019 in IBC (Inflammatory Breast Cancer)

Has anyone been on the AI Letrozole for longer than 5 years? If yes, I would appreciate hearing from you. I would prefer a PM, as I would like to discuss a few items with you about this treatment.

Thank you so much.............You all have a great day!

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  • trudy-erl
    trudy-erl Member Posts: 38
    edited January 2019

    The reason I deleted it was that I did not receive one single reply. :(

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  • JoE777
    JoE777 Member Posts: 628
    edited February 2019

    I didn't even know letrozole was used if you had IBC. I didn't know that it could be HR+

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  • LoriCA
    LoriCA Member Posts: 923
    edited February 2019

    Sorry you didn't get a response trudy. As is expected, there aren't many of us with IBC who are actively posting. You might want to try posting in the Lounge thread, that is where we spend most of our time. I think sbelizabeth might still be on letrozole because it's the last treatment listed on her profile (since 2012).

    Jo, I am HR+ with IBC. I'm also HER2+ and have been on targeted therapy (Herceptin & Perjeta) when I'm not on chemo. The PERTAIN study only showed a 3 month improvement in PFS when an AI is combined with Herceptin, a small possible gain for some miserable SEs. My MO hasn't yet felt that a slow-acting hormonal is appropriate treatment for my stubborn and aggressive IBC. It's probably more appropriate at Stage III, or maybe for somebody with Stage IV IBC who is lucky enough to get it under control and remain stable for a while.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2019

    Hi, Trudy. I'm sorry you didn't get a response! We are a small but supportive group so probably no one saw your post.

    Both my sister and I were ER+ with IBC and we will both probably be on an AI forever, or until serious side effects occur. She was also HER-2+ and was on Herceptin for a year. This was before Perjeta came into practice. We are both doing very well.

    Please jump back in if you have any questions we can help you with. SB

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