Extended hormonal therapy

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9697
9697 Member Posts: 5
edited October 2018 in Hormonal Therapy - Before, During, and After

Does anyone have experience or are taking femara or any other hormonal therapy beyond 10 years. I read that in the U.K. it happens

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Dear 9697,

    Welcome to the community. We are sorry for what brought you here but glad that you reached out. Let us know a bit more about you and your cancer situation. It might help our members to better connect to you and your questions here. Let us know if you have any concerns with navigating the boards. The MOds

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  • wintersocks
    wintersocks Member Posts: 922
    edited September 2018

    I am 6 years on Femara and live in the UK. The current protocol for this drug is 5 years here with no extra benefit being proved beyond 5 years so said my Prof of oncology at my last visit.

    I asked if I could stay on this drug until further evaluation/research of benefits of a 10 year therapy become known and he said i could even tho he suggested a change to Tamoxifen for me.

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  • 9697
    9697 Member Posts: 5
    edited September 2018

    Hi wintersocks... actually I have been on femara for almost 9 years. My onc has planned 10 years which is fine with me. Actually I want to stay on longer and read some articles that there was some research in the U.K. that 20 years was being tried. My sister was on an aromatase inhibitor for about 6.5 years then went off and had cancer everywhere by 8 years. She also had a 5mm lesion with no lymph node involvement same as me. I am fearful of stopping as I don’t want the same for me. I already spoke to my primary about it but my appt with oncology is 9/20/18 and i will bring it up then. Was looking for a clinical trial too as a way of trying

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  • palliser
    palliser Member Posts: 3
    edited October 2018

    What I would like to know is if the side effects stop when you discontinue Letrozole. I have another year to go before my 5 years are up and experience several side effects - joint, muscle, bone pain; insomnia; hot sweats; depression; etc. Whether I continue or not after 5 years will depend a lot on the side effects at quitting.

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  • 9697
    9697 Member Posts: 5
    edited October 2018

    probably your muscle and bone pain will be better but the night sweats and insomnia may take longer until your out of menopause. If your symptoms are too bad sometimes a change in aromatase inhibitor may be less bothersome to you. I would take it for 10 years though

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  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2018

    I have been off AI drugs for 2 years now. The pain in my ankles is completely gone. My hip on right still has lingering discomfort especially lying down at night but it is much better. I still have ear ringing in one ear and on and off sinus related headaches. But things are so much better.

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