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Early Stage Breast Cancer - anyone on Letrozole and Ribociclib?

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  • lori81459
    lori81459 Posts: 2

    I was diagnosed with stage 2 breast cancer with a high oncogene score. I finished chemo and surgery and am now on letrozole and Kisquali (been about 6 weeks). I wonder how many others feel like "their body is dealing with something" but don't know how to put it into words. I do have some digestive issues, some joint pain, but there is something else that I feel that is hard to articulate. It's almost a feeling of body harm, if that makes sense. I'm reaching out to see if anyone else has had this feeling. Thank you.

  • kayceezee
    kayceezee Posts: 7

    Hi everyone, back in January I commented here that I was going to start Kisqali, which I did in February. The first 2 months were fine, didn't really have any issues. Then in early May I started to feel very fatigued. My blood work was starting to show my liver numbers increasing. They stopped the Kisqali and had me get blood work more often. My bilirubin, AST, and ALT kept going up and up. When my bilirubin got to 9 they admitted me to the hospital. I was in for 5 days. The numbers were so high they thought it was something else besides the Kisqali. They gave me a full liver workup and didn't find anything else. I think it was here or on another forum that I saw others with this issue and they were given prednisone to get it under control. I kept asking for this and they seemed hesitant to give it to me, but finally they did and the numbers started to go down. I stayed on prednisone for a month and my liver has fully recovered. I'm mentioning it here because like I said, I would not have known to push for the prednisone if I had not seen that on a forum like this! So just on anastrozole for now and soon will be starting Zometa infusions for low bone density. I am happy for those that can tolerate Kisqali bc it does seem to work well. I think it's important for your doctor to monitor your blood work. I know that is a pain but is needed.

  • musiclover1
    musiclover1 Posts: 20

    Hi. Thank you for sharing. Glad you have recovered. That was scary. I have been on Kisqali and letrozole for 1 and a half years. So far liver enzymes are okay . I just have a slightly decreased white count.

  • lukasmom
    lukasmom Posts: 14

    @kayceezee Thanks for the reminder to do bloodwork. It's a total pain. I'm traveling now and have to get it done, and it's been a pain. Different health systems don't seem to communicate as well across state lines. I'm glad to hear your liver has fully recovered, and I'm grateful you shared your experience on Kisqali. I'm almost two years in, and sometimes I forget how powerful these drugs are as they have become such a regular part of life.

    Looking forward to getting off of these.

  • Hello all. New to the board and I'm learning a lot from your posts. I am getting a call from the specialty pharmacy tomorrow and get my Kisqali on Tuesday. I am Stage 2a ductal and lobular carcinoma. I have been taking anastrozole since June 23 with occasional hot flashes. I am really concerned about the side effects of the Kisqali although I see some of you have not had anything major. My biggest concern is a trip to Switzerland at the end of September. I haven't read all of the posts, but I haven't seen anyone talk about nausea/vomiting. Also, those of you who have side effects, how long did it take before you noticed them? Thank you in advance for support!

  • moderators
    moderators Posts: 10,428

    Hi @onthebrightside, welcome to the Breastcancer.org community! We’re so glad you joined us and that you’re already finding helpful information here. Starting a new treatment can bring lots of questions, so we hope you’ll find some support and reassurance from others as you get started with Kisqali. You'll also find helpful information here: https://www.breastcancer.org/treatment/targeted-therapy/kisqali

    And Switzerland in September sounds wonderful! We hope you’ll be able to enjoy your trip and that you’ll hear from others who can share their experiences with Kisqali.

    We’re glad you found us!

    The Mods