Finishing ten years of hormonals -- withdrawal?

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Member_of_the_Club
Member_of_the_Club Member Posts: 3,646
edited December 2014 in Hormonal Therapy - Before, During, and After

I was on tamoxifen for five years and am about to complete five years of arimidex. I had zoladex shots for most of my time on arimidex but finally had an oophorectomy last sumer. Soon I will finish teh hormonals completely, which is a happy thing though I am a bit nervous about flying without a net. Does anyone know what to expect when you stop hormonals after so much time?

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited December 2014

    MOTC - good to see you! Congrats on closing in on that 10 year mark!

    I was on AIs for only 5 years, but I had zero withdrawal-type symptoms when I stopped it. Only a gradual, but very welcome easing of the s/e. Bonus - 16 months after stopping AIs, my osteopenia had reversed itself and my bone density levels are now back to normal.

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  • aussieched
    aussieched Member Posts: 244
    edited December 2014

    NatsFan

    I am into my 7th year on AI Femara and am experiencing many side affects (ie hip pain when I walk, and decreasing bone density, now osteopenia). When you finished the AI's was there anything in particular you did, to help increase your bone density, or did it just increase when the AI was not in the mix?

    thanks Ched

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2014

    I did 5 years of Arimidex; I didn't have any withdrawal symptoms; I didn't have any severe SEs while on but once I was done I just had a very, very gradual feeling of being more 'normal/settled/okay' (I don't really know how to describe it). My bone density had stayed in the normal range but had been dropping steadily and has bounced back up since I've been off. All the way through Arimdex I did weigh bearing exercise & light weights, took calcium supplements, made sure I got two servings of dairy & ate a serving of prunes (which build bones) every day, and I have kept up that regimen since I've been done too. It is kind of scary when you first go off, but very liberating too. Congratulations!

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited December 2014

    Thanks everyone. I haven't had many side effects except loss of bone density. I'm on prolia and my bone density has rebounded but now I wonder if I'll need it after I go off arimidex.

    Jo-5, what kind of withdrawal symptoms did you have?

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited December 2014

    Aussie - per my onc's orders, I supplemented with calcium and Vitamin D while on AIs, along with doing at least 30 minutes of exercise daily. My onc was especially insistent about the exercise, including that I do weight bearing exercises at least a couple of those days. Like Ruth, I have kept up all those measures after finishing AIs and I think that's helped my bones build back up.

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  • aussieched
    aussieched Member Posts: 244
    edited December 2014

    Thank you NaatsFan. I have also taken the calcium and vitamin D while on Femara, however the bone density has taken a big dive in the last 2 years. I did have the ovaries out to put me into menopause, so suspect this may have also contributed to the bone density problems. I was also exercising most days for the first 5 years of Femara, but then due to major bouts of vertigo which lasted 9 months, plus also excruiating bone, hip and joint pain from the femara I have cut back on the exercise, which is probably the cause of the bone density probs.

    Ched

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited December 2014

    Hi

    I was on tamoxifin for 5 years, then femara for 5 years. I didnt have any withdrawal symptoms.

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