Anyone been taking Arimidex for 10+ years?

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sugarplum
sugarplum Member Posts: 318
edited January 2017 in Hormonal Therapy - Before, During, and After

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

    wow, I could only take 2.5 years on anastrozole and 1.5 on exemestane. I am still feeling the effects.

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  • aussieched
    aussieched Member Posts: 244
    edited August 2016

    Hi Sugarplum,

    It will be 9 years next month since I started Femara, however I have had a few breaks along the way due to vertigo, so it is probably only about 8.5 years that I have been taking Femara. I also have gone from having very good bone density when I started femara to now also being close to osteoporosis, so I am close to having to stop taking it, probably in the next few months. My oncologists are suggesting that I go onto Tamoxifen to complete at least 10 years as they say they want me on something up to the 10 year mark. I would be very happy to keep taking it if it were not for the osteoporosis. I have had every imagineable side affect from the drug and has been very hard to keep taking it, however I would do so, if I could, as it is my safety blanket.

    Ched

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  • evamaj
    evamaj Member Posts: 1
    edited September 2016

    I am! I've been on Arimidex since 2006, following my stage 3 ER+|PR- diagnosis,and treatment.Im afraid to go off of it for the fear of recurrence ...I've been tolerating it well,but unfortunately my last bone scan showed osteoporosis......My medical oncologist has retired since than,so I have to look to someone new for advice....Julie are you still on it? Can anybody advice me on that... Thank you so much

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  • cp418
    cp418 Member Posts: 7,079
    edited September 2016

    I've been on Femara ( Letrozole ) for 9 years and around year 2 showed osteopenia. I started Zometa infusions twice a year for total of 8 infusions with "some improvement". The past year I switched to Prolia injection twice yearly (easier for me than the 30 minute infusion). I'll see on next Dexa scan if better response to this drug in my hips. Last Dexa scan showed much improvement in spine. IMO doctors wait too long and should minimize and try to prevent bone loss early.

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  • LizM
    LizM Member Posts: 963
    edited September 2016

    Evamaj, I started Arimidex in 2006, then switched to Femara in 2007. My first DEXA in 2007 showed osteopenia and I started taking Fosamax plus D for 7 1/2 years. In 2014 my DEXA got a little worse (low side of osteopenia) and in 2015 I had my first influsion of Reclast. In July of this year, my DEXA showed osteoporosis in my spine. I met with my oncologist and he told me to stop Femara. I was at 10 years of an AI anyway so was expecting to go off. Being diagnosed with osteoporosis ensured that my oncologist would not let me stay on longer than 10 years. I met with my endocrinologist and we decided to go with Prolia this time. I should have my first Polia shot next week. I had dreams of going off Femara and having no meds and no pain. No such luck. I've moved on to bone drugs and I still have the muscle pain that I thought was from Femara. Maybe I'm just old.

    CP - When you stop Femara next year, will you also stop Prolia since you do not have an osteoporosis diagnosis?

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  • sugarplum
    sugarplum Member Posts: 318
    edited January 2017

    Yes, here I am with yet another bone scan under my belt (which showed I was remarkably stable - even without any Reclast injection - although still osteopenic) so I will be approaching my oncologist on January 19th with a request to renew my Arimidex prescription for an 11th year - we'll see what he says.

    Best to all - Julie

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  • cp418
    cp418 Member Posts: 7,079
    edited January 2017

    The moderators posted this very helpful link. http://www.breastcancer.org/research-news/ai-use-m...

    It really is about an individual's risk level. My dx date 2006 was prior to all the newer genetic testing which was not allowed for node positive patients. So based upon 1/18 positive node, Ki67 20% and ER/PR 100% positive my 2nd oncologist advised me to do minimal 8 years of anti-hormonal treatments. Osteopenia has been a chronic issue since year 2 - so I had Zometa infusions and now Prolia injections. I just want to mention that the Prolia injections are far easier with minimal discomfort afterwards. I feel I will get greater benefit from Prolia after having tried Zometa after 8 total infusions at 2 infusions per year. It was time for me to try a different bone treatment.

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