How Many are doing 10 years on Aromatase Inhibitors

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  • HomeMom
    HomeMom Member Posts: 1,198
    edited February 2022

    mary625 I am on Arimidex, I'm not sure what the difference is, but my MO suggested stopping after 10 years. That's 3 years from now, so she could change her mind. Kind of disturbing there aren't enough women to do a study after 10 years? Why is that??

  • ThreeTree
    ThreeTree Member Posts: 709
    edited February 2022

    Agree with HomeMom. It's downright scary to think that there aren't enough women beyond 10 years to do a study. Is this info really correct?

  • MaleBreastC
    MaleBreastC Member Posts: 65
    edited February 2022

    I was on Tamoxin for 14 years and was asked to stop and 3 years later have mets.. I wish I had continued it, but that is my case.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2022

    The first aromatase inhibitor was introduced to the market in 1994. That's just 28 years ago. It has been a game-changer for post-menopausal women with ER+ breast cancer; significantly decreasing recurrence and death as a result.

    Like all new drugs, it takes time (a lot of it) and money (a lot of it) for research to understand its effects on the human body and compile reliable statistics about them. At first, recommendations were for a 5-year period of drug therapy after initial diagnosis. As time went on, research revealed there was a benefit for some people to extend their therapy to 10 years.

    And that's where we are today. The drug simply hasn't been around long enough to know precisely what happens for those who take it longer than 10 years.

    Mary625, I'm in almost exactly the same boat. I'll be at 10 years this coming July. I think my oncologist wants me to discontinue it, but I'm doing pretty well and have conflicted feelings. I'm borderline osteopenic but I'm taking a bisphosphonate that's helping. My lady bits think they're 100 years old, but I've learned to manage the symptoms. I would rather stay on letrozole than discover a recurrence down the line. And my cancer was pretty high risk.

    Where's that crystal ball? Can you buy one on Amazon?

  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited February 2022

    I’ve berntaking Arimidex and getting Prolia injections for 5 years. After getting the results from the Breast Cancer Index - yes continue endocrine therapy along with high risk, I'll be staying on Arimidex for 5 more years. If you find that crystal ball let us know.

  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited April 2022

    I am on the ten year plan. I have 18 more months to go and I wonder what's next. I have tolerated Letrozole well. I am very unhappy with the rapid aging and I am always soooo tired but that likely is unrelated. If given the choice I would like to continue. The drug gives me peace of mind.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited April 2022

    notbrokejustbent - It's tough spot to be in. Love hate thing with this drug, yet the day will most likely come when you have to stop taking it and with that goes the peace of mind. But is it really what is keeping us disease free? I think I'm going to work on what I put in my body while making sure I keep myself physically healthy by exercising. Maybe it is all we can do

  • susansfca
    susansfca Member Posts: 8
    edited August 2022

    Hi There My onc told me today that I can end my AI treatment. I was on Luporn and Tamoxifin for 2.5 years then dropped the Lupron and switched to Anastrozole. I am now at 7 years total. I am a little nervous about letting go of what feels like a life line to me. I am in great shape, and work out regularly. My bones have not been effected but I am always tired. Onc says I will get my energy back. He says that there are side effects the heart that I should think about. He also said that the risk of recurrence goes up 1% every year. Great so the older we get the higher chance of recurrence.

    How did you feel after stopping treatment? Anyone out there? Thanks in advance

  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited August 2022

    I have one more year to go with my Letrozole. I think about going off all the time and it is scary. I feel I will have no protection then.

  • muska
    muska Member Posts: 1,195
    edited August 2022

    I am in my ninth year of anastrozole. My MO wants me to complete ten years and then switch to tamoxifen or Evista.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited August 2022

    susanfca I'm at the same stage you are, diagnosed in 2014. I've been on Arimidex since Dec 2014. I feel the same way, it's like a safety net. I was going to go the 10 years after she said because of node involvement, it would be extra insurance to go the 10. Last appointment she said it is up to me, she doesn't want me to feel pressured. It has affected my bones and my weight has yo yo'd, but I have been pretty active exercising keeping it steady.

    When I go get my bone scan next spring, we'll see if it is still affecting the bones - I get a Prolia shot every 6 months too.

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