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Kisqali

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Anyone taking Kisqali for Advanced Stage Metastatic Cancer. If so how how long did it take for you to know if it was working for you? I have Mets to my liver and spine, likely in lungs too. I just want to feel better.

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  • amel_83
    amel_83 Member Posts: 115
    edited November 2023
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    @lakeli hi, I took kisquali for about 15 months. It took 12 1/2 month to start working...i had metastasis all over my scheleton and spine, 3 collapsed vertebrae, I was in a hospital, couldn't move, not even to use the toilet. I had excruciating pain, and was under opioids the whole time. Slowly the pain went away, i started walking and now I trail run every day an hour and do intensive yoga 30 minutes a day. I had many liver mets, and they all disappeared. Also the mets on my bones not just wern't without metabolism on PET, but most of them didn't show up on tc scan either, the real bones come back! For me was a miracle med, and I had almost no side effect, just a little bit the second and third cycle. Unfortunately it stop working recently... I'm sorry about that because worked so well and didn't make me feel bad...and my bones met still not showing up...

    So I wish you good luck with it! Hope it will make you feel better soon, it is a powerful medicine!

  • moderators
    moderators Posts: 7,911
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    @lakeli - Welcome to our community! We are sorry for your stage 4 diagnosis but again so glad that you reached out to join us.

    Besides amel_83 and other member's experiences on kisqali, we thought you might find these articles on our main site helpful:

    We hope you find it helpful! Feel free to give it a read whenever you have the time, and if you have any questions, don't hesitate to reach out. We are here for you!

    Sincerely,

    The Mods

  • keris113
    keris113 Member Posts: 45
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    I recently started taking Kisqali as well over the summer. I am about to start my 5th cycle and have scans coming up soon, so will see if it is working. Not sure how soon you can tell if it is making a difference either. I have liver mets as well. So far I have had minimal side effects, some fatigue and nausea. Best of luck with it!

  • cintya
    cintya Member Posts: 2
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    Hello, has anyone had joint pain or something similar while they are on kisqali? Thank you.

  • traii
    traii Member Posts: 379
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    Hi


    I've been on Kisqali since March 2019.

    This (knock on wood) has been my first line treatment and working well. I'm on 600mg (3×200mg) daily, 1 week off combined with letrozole and was on monthly Xgeva injections, but of recent once every 3 months now.

    I have Kisqali just before bed, I sleep off any nausea (I note if I don't have even a like a simple cracker I do get a little bluh) but having it before bed I wake up fine, little aches and pain, hot shower does the trick.

    Hope you're all doing well and hope this drug works wonders for you x

  • moderators
    moderators Posts: 7,911
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    Hi again @lakeli,

    We also wanted to point out that we do have an established Kisqali thread in the Stage IV forum, where you might gain some additional insight.

    We hope this helps!

    —The Mods

  • rgoossen
    rgoossen Member Posts: 16
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    I began the same treatment plan as you in September 2023. Letrozole, Kisqali, Xgeva. Mets to lungs and bones. My current side effects are nausea (drinking ginger tea helps) and constipation. I'm on my first one week break. Wondering if there any helpful tips you can give me?

  • amel_83
    amel_83 Member Posts: 115
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    @rgoossen

    I was on kisquali for more than a year, and after couple months i had no more side effects.

    And all though it now stop working, it was magical for me, it make most of my estensive liver and bone mets disapper.

    Good luck!

  • anx789
    anx789 Member Posts: 232
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    Ive been on Kisqali for 12 months now. I’m taking 400 mg a day since 3rd or 4th cycle due to low ANC. I have progression on bones only per scan last month. I have a new Onco and he wants me to go back to 600 mg, my ANC has been 1.0-1.2. He said as long as my ANC will stay above 0.8 it’s okay. Did anyone here stayed on 600 mg with ANC of 1? I appreciate any input.

  • mozuke1
    mozuke1 Member Posts: 39
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    I've been on 600mg Kisqali for about 18 months. My ANC is usually between .8-1.2. My dr has not been concerned and it has not caused me any issues. I do not regularly get sick or have infections, I recovered quickly from Covid when I got it last year. I work in a public library, go to church and travel.

  • anx789
    anx789 Member Posts: 232
    edited November 2023
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    thanks @mozuke1 , Im glad to hear this because my previous Onco was so concerned when I had the .8 ANC.