Recovery meds- what to do

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nextstepsfromhere
nextstepsfromhere Member Posts: 26
edited June 2014 in Life After Breast Cancer

Hi.  I am one year out from double m, radiaion, chemo, hysterectomy...started out on Tamoxifen, it was ok...but since Aromasin is latest / greatest, I was switched.  I have been on it now for a year...I continue to have real pain in my hips and back...so much that I am considering stopping and going back to tamoxifen...it also seems my hair is thinning.  If I do that...what happens after 5 years on tamoxifen?....I want to live...but am a little freaked out about how these medications are affecting me and what happens down the road?  When I get up from sitting down I looke like a 90 year old man trying to 'get going and straighten up'...it is awful!  I am 44...any suggestions?  any thoughts on the treatments?  I want my life back!

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  • kira1234
    kira1234 Member Posts: 3,091
    edited December 2010

    This is an issue many of us are dealing with. I'm very new having only been on Femara about a month, but I'm already having joint pain. There is a lot of info about the effects of these drugs on the hormonal threads. Some ladies are suggesting getting glutin out of our diets helps with the SE's. I am working on at least reducing the glutin in my diet. Good luck!

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  • badger
    badger Member Posts: 34,614
    edited December 2010

    I'm 51, perimenopausal at dx, and on tamox, will be for 5 years. After that, probably on to an AI.

    From tamox I have weight gain, hot flashes & night sweats.  Those could be from chemo-pause.  Also I have achy joints first thing in the morning and if I sit too long but I chalk that up to middle-age and a family hx of arthritis.

    Gentle yoga has helped me a lot.  I started with a beginners class through the YWCA, so I could have a real person teach me, and got a DVD, yoga for BC survivors, to do at home.

    Sorry you're going thru this... wish I had more wisdom to offer... best wishes and {{hugs}}

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  • nextstepsfromhere
    nextstepsfromhere Member Posts: 26
    edited December 2010

    HAS ANYONE JUST SAID NO TO THE MEDS AND STILL ALIVE TO TELL ABOUT IT? :)

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  • iodine
    iodine Member Posts: 4,289
    edited December 2010

    Have you talked to your doc about your side effects?  There are some meds that are helpful, anti inflammatories, for one.

    I am sure some have stopped the meds and lived, but I can name a few who took them and lived better.

    I was post menopause and took tamox. for 2 years and Aromasin for 3 mos.  My quality of life was very poor and my onc and I agree I'd given it a good shot and agreed I should stop it due to QOL issues.  Mine was joints and flashes, my daugher told me that after a couple of weeks she was so glad to have her mom back, the other lady was ok, but not her mom.

    They do effect us--no doubt.  Short and likely long term.  But I would be the last to recommend anyone not take them.  I know there are blood tests one can take to see if tamox is effective for them, not sure about the meds you are on.

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  • REKoz
    REKoz Member Posts: 590
    edited December 2010

    I was diagnosed exactly one year after my last period. Age 53 then "officially" postmenopausal. Could not tolerate any of the AL's. Suffered from all of the QOL issues posted here. Being that I was 90% ER + I was afraid to do nothing. My Onc. agreed wholeheartedly and I have been on Tamoxifan since Feb.  It is much kinder to me. I also take 75mg of Effexor which totally eliminated hot flashes and provides me a good night's sleep. For the miniscule advantage AL's supposedly have over Tamox, I am willing to go with feeling my age instead of 90.

    I wish you the best in the road ahead.

    Ellen

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited December 2010

    Nextsteps .. I said no to the medications 3 1/2 years ago.  I'm still alive.

    Bren

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