Kisqali/ribociclib, Faslodex/fluvestrant & Xgeva combo - Anyone?

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  • star2017
    star2017 Member Posts: 827
    edited July 2021

    tangandchris - your experience with your first faslodex shot reminded me of mine. It was the week I received the new diagnosis, and in order to get the faslodex injections, I had to go to the same infusion center where I had received chemo and rung that bell three years earlier. I was shaking and in tears. I was taken by such surprise by how being back there affected me. The poor nurse offered to wait, but I just wanted to get out of there.

    Anyway, the injections I've had since then haven't been terrible. It was just the shock of everything. I hope things have gone better for your since.

  • NCYogi
    NCYogi Member Posts: 47
    edited July 2021

    Hello everyone, just checking in to see how you guys are (still!) doing on Kisqali? Holding steady? How’s everyone feeling? I finally got approved for K & starting soon. How quickly did you notice se? Thanks for any info. Trying to prepare myself for round 1…. x

  • JaneNJ
    JaneNJ Member Posts: 7
    edited July 2021

    Hello All,

    New to this page. My name is Jane and I was dx'd with MBC about 6 weeks ago. I am on Faslodex and Kisqali.

    I'm only at end of my second week of first cycle of Kisqali and side effects have not been too bad so far. Some nausea but not terrible, right after I take it (I've been taking in eve after dinner). The nausea passes in about 20 mins or so. I was definitely interested in hearing others report that fatigue can build once into the third week, so we'll see how that goes. I'm def very tired early in the evening but I've never been a night owl anyway, lol. I was at the beach this week and my skin is definitely more prone to burning now and I also got some skin rash after being in the sun. Shade it will be for me from now on!

    The Faslodex butt pain has been a bit of a problem so I will def try that massaging and walking right after the injections that was recommended - thank you. It's been super hot here in NJ so the hot flashes have not been fun!

    All this being said, I'm finding the se's manageable so far. But of course it's all still new to me!

    Looking forward to sharing and learning together.

    Jane

  • NCYogi
    NCYogi Member Posts: 47
    edited July 2021

    Hi Jane!
    So glad you’ve joined this thread. We are on similar timelines (same dx timing) but I haven’t started K yet. Still working through the insurance process. I will hopefully start next week. I will also be at the beach so Ill be very careful in the sun! Thanks for the warning.

    I’m getting my 2nd round of Faslodex tomorrow. I was very sore the first time. The nurse put the shots in my hips which (I’ve read) is the safer area in order to avoid aggravating your sciatic nerves. Also to warm up the “syrup” & have the nurse inject it very slowly. I’m going to follow this advice tomorrow & hope for less soreness.

    Good luck on this treatment & keep us updated. I’ll do the same.You might want to fill out your profile so we’ll understand your dx better. The ladies on these threads are a wealth of support & information!!

  • JaneNJ
    JaneNJ Member Posts: 7
    edited July 2021

    Hi NCYogi-


    I didn't even know there was a profile to fill out lol so will do so now. Glad to connect with you and others here!


    Jane


  • NCYogi
    NCYogi Member Posts: 47
    edited July 2021

    Hi Jane,

    Just checking in to see how you’re doing? I started Kisqali & so far I’m fine but it’s only been a few days! Hope you (& everyone else) is doing well. x

  • JaneNJ
    JaneNJ Member Posts: 7
    edited July 2021

    Hi all,

    Thanks for checking in NCYogi. I'm literally just about to take my last dose of Kisqali for this first 21 day cycle. Feeling well overall - just tired by around 6 pm (now lol) and still some skin rash. My MO told me I could take an over the counter antihistamine for the rash and that seems to be helping. Hope Kisqali goes smoothly for you - overall I can't really complain about it!

    Jane

  • beth1965
    beth1965 Member Posts: 455
    edited October 2021

    Hello everyone

    On no my 3rd round of faslodex added kisqali 3 pills 600mg today reading up on your posts

    Just wondering how everyone is doing have many people had this combo shrink Mets

    Hope you are all doing well

  • NCYogi
    NCYogi Member Posts: 47
    edited October 2021

    Hi Beth! I’m on my 3rd cycle but haven’t had scans yet so I’m not sure about effectiveness (yet). I can tell you that my breast tumor (large!) has shrunk a lot because I can barely feel it & it WAS big & hard. My SE have been minimal so far. I’ll let you know after my scan. Fingers crossed for all of us

  • beth1965
    beth1965 Member Posts: 455
    edited October 2021

    Hi Yogi nice to meet someone else on it

    Just the fact your time has shrunk is great news I am so happy for you

    So far not much SE. either I’ve just had some heartburn and trouble sleeping so I think I will stop taking in evening and take maybe at lunch Just wondering what time you take yours

    Yes please keep posted about your scans very appreciated

    I’m feeling hopeful for you

  • Nola70115
    Nola70115 Member Posts: 85
    edited October 2021

    I've been on this combo about six months. At my first set of scans, the mets on my liver had reduced by 50%. No change to the tumor in my armpit. I've got my next set of scans in about two weeks. I have not had bad side effects except in the last month or so I've started getting joint pain from the faslodex. My family took a trip to Disneyworld earlier this month and by the third day I had to rent a scooter because the pain from walking all day was keeping me from enjoying the trip. I felt bad about that, but the scooter really helped. I generally take my meds at night with a protein shake, then follow them up with a dose of medical THC (cannabis tincture). The THC helps me sleep and reduces nausea.

    I'm also on a whole stack of supplements prescribed by a integrative medicine doctor with a background in oncology. I think they help with the side effects. I only really started noticing the joint pain when I let some of the more expensive supplements run out.

  • beth1965
    beth1965 Member Posts: 455
    edited October 2021

    Nola wow 50% that’s a huge amount of gone from your liver. Im very impressed sounds like it’s really working for you. Hopefully next scan shows improvement in your other areas

    I am hoping to add canibis oil into my mix once settled in on other drugs so maybe will help me with any upcoming SE

    Glad you were able to get scooter to finish enjoying your trip Thanks much for sharing




  • NCYogi
    NCYogi Member Posts: 47
    edited October 2021

    Hi again, I take my pills with dinner to avoid nausea. I’m not sleeping great but I blame that on my sudden menopause (oopherectomy) & faslodex. 🤷🏻♀️ Hot flashes wake me up nightly. I’m going to try acupuncture & see if that helps. What cannibis do you use? Thc is illegal in NC & I haven’t investigated the medicinal route yet. Any advice is welcome!

  • beth1965
    beth1965 Member Posts: 455
    edited October 2021

    yogi- sudden menopause sucks they did it with me in beginning of treatment. But a few of. My friends said my major symptoms with it were shorter than they had doing it regular so maybe that’s something good out of it.

    Would love to know if acupuncture helps I am so curious.

  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2022

    I'm currently on this regimen. I'm on Xgeva as of 3 months ago, added late. I was searching for Xgeva info, but I'm not seeing much here.

    I had my 3rd shot today and by the time I got home I felt completely wiped out. Surprisingly because I didn't notice this the other 2 times.

    Do yall notice Xgeva adding fatigue? Of course I was told this drug has minimal se's lol. Don't they always say this?

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