Has anybody been on Arimidex over 10 years?

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sugarplum
sugarplum Member Posts: 318
edited January 2017 in Stage III Breast Cancer

I'm approaching the 10-year mark this December and my onc says I'm moving into uncharted territory. I can't believe I'm the only one who's been on it this long??

They are pressuring me to switch over to Tamoxifen since the Arimidex has almost put me into osteoporosis, but I'm of the opinion "if it ain't broke, don't fix it "(no pun intended, of course).

Would appreciate any feedback you can give me on this - thanks all!

Julie

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2016

    sugarplum - I've spoken to thousands of breast cancer patients and survivors over the last 4.5 years.  I've not met anyone yet on Arimidex 10 years!  But I bet there are some on these boards!  Since10 y ears is becoming more common (I am on Arimidex for 4 yrs and MO said plan on 10), I'm curious why your MO continued the Arimidex after 5 years.  Obviously, you were Stage IIIC, but your MO was before his or her time!  Would love to hear your story!!  

    Congratulations on 10 years!  My sister is one year out with almost your same diagnosis.  I just texted her.  She said you give her more hope!  Thank you!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2016

    Hi, Sugarplum. I don't have much to contribute, but I wanted to say "kudos" for hanging in there with the AI, and for coming here to encourage all of us. My MO says I'll be on Femara for at least ten years, probably longer. I'm OK with that. I want to use every weapon possible to keep the beast in the dungeon where he belongs.

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  • lulu2533
    lulu2533 Member Posts: 108
    edited August 2016

    Wow Sugarplum. We have almost the exact same diagnosis and same name too!!

    I was told by my MO that I would probably be on arimidex or something else for the rest of my life. You give me so much hope!! I didn't even hit the 1 year mark yet for being on the A.I. Thanks for sharing :)

    Julie

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited August 2016

    Julie.....

    I am one of those......I was originally on Tamoxifen until I had my ooh....about 9 months.....but have been on Femara for the other nearly 12. I have no plans going off this drug. It has gotten me this far and I don't want to jinx anything;)


    Jacqueline


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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2016

    Yay, YATCOMW! It's do-able!

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • sugarplum
    sugarplum Member Posts: 318
    edited August 2016

    Thanks to all of you guys! Denise, I strong-armed my onc into renewing my prescription every year, but as I mentioned it's been more of a struggle with them lately because of my declining bone density. I, too, am afraid to let go of my final treatment trapeze and vault off into nothingness! May have to just bite the bullet & switch to Tamoxifen, depending on my DEXA scan results in December...we'll see.

    Best to all - Julie

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited August 2016

    i was on arimidex for 10 years ... and now have been off it for 1 year

    best of luck !

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  • silvergrl
    silvergrl Member Posts: 13
    edited August 2016

    Hi Julie,

    I've been wondering about this too - did 18 mo of Tamoxifen before my hysterectomy in April 2009. Been on Letrozole since. My onc definitely says if I don't have side effects to keep on it pretty much indefinitely but I don't know what side effects will look like. Also don't know what feels "wrong" having lived post treatment for almost 10 years.

    Having just been told by insurance that I am still 100% uninsurable (which makes me wonder what they know that I don't) I'd like to keep on it as long as I can. I think with my (and your) node count it feels like it is my only insurance

    So, no insight to give you but on your page.

    Katie



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  • beth1965
    beth1965 Member Posts: 455
    edited August 2016

    I was told to keep taking mine for life

    I am on my 3 year

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  • Nancy10102006
    Nancy10102006 Member Posts: 25
    edited September 2016

    Hi all - I haven't posted in a long, long time but when I saw this one....I figured it was time.  I have just about completed 10 years on Arimidex and have been told at least 5 more.  I was rather surprised as I hadn't heard anyone staying on for 15 years.  But now I see "life" is also a possibility....hmmmm.  Well the good news is it has been a cancer free 10 years and I plan to keep this way.  So if it means taking Arimidex longer than so be it!

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  • sugarplum
    sugarplum Member Posts: 318
    edited January 2017

    Just checking back in with everybody: met my new oncologist yesterday who, when I handed him my Arimidex prescription to renew, handed it right back to me! Apparently there was a new study released last month which said there is no proven benefit for continuing Arimidex past 10 years. I showed him my (stable) DEXA scan, my cholesterol reading (163), and my (stable) heart monitor results but he was not to be budged, saying the possibility of future complications outweighs the unproven benefit of continuing the medication.

    SO DISAPPOINTED AND SCARED. I have a 90-day supply left which I will continue to take until I figure out what to do next....

    Julie

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  • SSInUK
    SSInUK Member Posts: 245
    edited January 2017

    I understand the fear Julie. Second opinion?

    Here in the UK it's very hard to get more than 5 yrs if it's not proven. From what I could understand last november's San Antonio breast cancer conference featured studies casting doubt over long term use of AIs. Weird when 10 yrs of tamoxifen was proven to be better than 5. I'll be grateful to make it to 5 years - but if I do I worry about the battle to stay on an AI. Let us know what path you find, good luck, go fight for what you feel you need. Its your body - and your mind. You're the one who has to live comfortably in both.

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  • sugarplum
    sugarplum Member Posts: 318
    edited January 2017

    Thank you SS!

    Side note to you: my mother was born in Harrow in 1931 - after 62 years in the U.S. she still sounds as if she just got off the boat! I really miss my childhood trips to England - haven't been back since age 17 in 1973...

    Julie

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  • vacationbound
    vacationbound Member Posts: 171
    edited January 2017

    look at the MA17R study

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  • peacestrength
    peacestrength Member Posts: 690
    edited January 2017

    Hi sugarplum, Good to hear from you.  I agree with SS about a second opinion.  I have a stage 3 friend who has been on an AI for over 10 years. 

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2017

    Oh, no...I tolerate my letrozole very well, and it feels like that tiny pill is a big kevlar shield between me and recurrence. I know my onc is planning on at least ten years, but when that date comes, I sure hope she doesn't want to discontinue it.

    Me, in a dark alley, "psst....hey, sister....you have any letrozole I can score?"

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited January 2017

    I'm stage 3c / borderline stage 4 (lots of circulating tumor cells and tumor DNA in my blood). My oncologist told me I'll be on AI's for the rest of my life - or until he stops being my doctor anyway. He says he's seen too many patients go to stage 4 shortly after going off AI's.

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