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New kid on the block


Hi everyone. I just found out yesterday that breast cancer has returned after being on AI for 5 yrs and has metastasized to my liver. New treatment plan is Ribociclib and Fulvestrant.


  • irishlove
    irishlove Member Posts: 527

    Hi paddlinlou. Welcome to a great support group, I am sorry you moved into mbc. You might try the mets to liver thread, newbie thread and threads for the meds you are on, for some very good information and support. Again welcome and hope you find comfort and knowledge from these great folks here.

  • moderators
    moderators Posts: 8,279

    @paddlinlou we're so sorry to hear this… We are sending you warm thoughts and best wishes for the success of your next treatment. Please, keep us posted!

    The Mods

  • cure-ious
    cure-ious Member Posts: 2,758
    edited July 2023


    Welcome, sorry for the reason you are here, but you will find a lot of hope and important information on current and upcoming treatments here. Ribociclib and Fulvestrant is a powerful combination, but because you apparently got recurrence on an AI, do make sure that they did the test to make sure that the cancer did not develop an ESR1 mutation. These mutant forms of the estrogen receptor enable the cancer to grow even without estrogen, and are better treated by one of the newer-generation SERDs (like Elascestrant), rather than Fulvestrant. Very likely they checked that, but good to know. To cope with this scary diagnosis, some of us have decided not freak out until it was time to do so, and with some of the treatments in clinical trials that day may not come for a long, long time (if ever)…

  • paddlinlou
    paddlinlou Member Posts: 11

    Thank you for your response. My oncologist is testing for ESR1. I’m also being referred to a surgical oncologist who specializes in liver. Liver is only metastasis right now and it’s small. Holding off on Riciclobid until I see him as they don’t want my WBCs to drop if surgery is option.

  • eleanora
    eleanora Member Posts: 299

    Hi Paddlinlou

    Sorry you have had to join us, but we are here for you and ready to answer questions and be "in your pocket" for the difficult times. I have been on Ribociclib and fulvestrant for a year, as well as Xgeva as a bone strengthener, and it's working so far.

    You have already had a response from Cure-ious, our resident expert, who has provided invaluable information and analysis of complex topics to all of us.

    As Cure said, check out the thread for Ribociclib and you will see others' experience with this treatment.

    Most importantly, know that you are not alone. Whether you are having a down day, an anxiety attack or celebrating good news, bring it here and we will do it with you.

    Please update us on your meeting with the surgeon.


  • paddlinlou
    paddlinlou Member Posts: 11


    I received my first Faslodex injections today. Oh my! My urine smells wicked. The clinic didn’t mention that side effect.

    It could choke a horse.