Taking Arimidex longterm

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JillA
JillA Member Posts: 1
edited March 2017 in Hormonal Therapy - Before, During, and After

Hi everyone. Would like to know if there is anyone in the group who has been on Arimidex for 10 years or over? I am 53 now and have been on it for 10 years after Stage II BC, chemo, rad and Tamoxifen for 2 years. I just wondered if anyone continues it indefinitely? My bone density was shown to be osteopenic 4 years ago and I started to take a weekly biphosphonate, Alendrobell, which seems to have stabilised it. Thanks for any advice.

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  • reflect
    reflect Member Posts: 576
    edited December 2016

    I'm interested to know also, as my MO told me to stay on it forever. (I've just started.)

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  • Jare
    Jare Member Posts: 3
    edited December 2016

    Hi, I was diagnosed in 2005 with IDC stage 3a, 4 positive nodes, did bilateral followed by chemo and radiation. Was on tamoxifen for a few months followed by almost 8 years of arimedex, than switched to examestane, so I have been on Ai's for almost 11 years. The plan is for life long examestane, but I recently noticed my hair really thinning. I know this can be a possible side effect and have decided to stop for a month. Has anyone else noticed this side effect? I was bald during chemo and don't want to repeat it if possible. The only other side effect has been aching joints and lowered bone density. Thanks

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    I have been taking Arimidex for 9 years and the hair thinning comes and goes. Also, the other side effects come and go. I now am stopping the Arimidex after seeing the info from San Antonio. I don't think that continuing for me is the best. It is so scary to stop.

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  • Dennyse
    Dennyse Member Posts: 27
    edited December 2016

    Hi, What information did you come by from San Antonio? I am only 2 months in to my AI treatment.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    My mo said 5 years only. I haven't seen any studies that show any benefit for staying on it longer. However stage 4, bc with mets is a different story.

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  • muska
    muska Member Posts: 1,195
    edited December 2016

    When I saw my nurse in October, she said 10 years.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited December 2016

    I'm stage 4, but my MO's plan is to keep me on Arimidex until it fails...meaning I have a progression. So far, so good. I'm currently NED from the neck down and my brain scans have also been clear.

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  • michelept
    michelept Member Posts: 20
    edited December 2016

    I've been told to stay on it for life, as well.......but I'm not sure tat's gonna happen. It causes me massive bone pain and bruising.........

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2016

    michelept, get a second opinion.

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  • gab34
    gab34 Member Posts: 5
    edited January 2017

    I have been on Arimidex for almost 2 months.  I am extremely tired and have some weakness at times (which I could live with.)  But as well my feet and legs are 'puffy'. Has anyone else had this side effect.  My oncologist told me that it will take a while for my system to adjust to the medication. 

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  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    My system only got worse the longer I took anastrozole the worse it got. My mo recommended exemestane but it too had other problems. I never tried femera.

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  • sugarplum
    sugarplum Member Posts: 318
    edited January 2017

    JillA - I just passed 10 years on Arimidex last month, and my onc told me this week he won't be renewing my prescription because of the San Antonio study (Dennyse FYI, it showed that for women over 60, risks can outweigh benefits after 10 years on an AI.) I am almost 61 & osteopenic (Reclast infusions stopped helping a few years back) but am very scared to let go of my daily little pill. I'm using up my last 90 days and am half tempted to try & find another doctor :)

    Will be interested to follow this thread & hear other stories...Julie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2017

    I was on Arimidex for 9 years after taking the BCI and finding a 5.3% benefit of continuing 10 years. I stopped at 9 years due to decrease in bone density. I too feel afraid to stop taking the pills.

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  • hazzlane7
    hazzlane7 Member Posts: 2
    edited January 2017

    I had my lumpectomy (stage I, under 2 cm, no lymph node involvement) in August 2016, and then radiation and then Arimidex. The joint pain was so bad that I stopped. now I'm considering not taking any adjuvant medication. Anyone seen any information on the consequences of not taking Tamoxifen or anything else?

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  • gab34
    gab34 Member Posts: 5
    edited March 2017

    I had a lumpectomy in Sept. 2015, followed by radiation, and then Tamoxifen.  Because of side effects from the Tamoxifen my oncologist switched me to Arimidex.  However I have had some side effects from it as well, but the worst seems to be weakness in my legs.  I have been off it for a couple of weeks but the weakness is still there.  Anyone else having this same problem? 

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2017

    It takes a long time maybe years for AI side effects to get better. I have been off over a year and still have pain and weakness in my hip.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2017

    I've been off the AI's for 10 months and it has improved but I agree with Meow that it takes quite some time toget over the side effects.

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  • gab34
    gab34 Member Posts: 5
    edited March 2017

    meow and farmerlucy:  Thank you for telling me about your experiences.  Right now I am off Arimidex, but it's a tough decision whether to stay off or try again. 

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