Questions about Verzenio, Xgeva and Faxlodex

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dibel
dibel Member Posts: 161
edited May 2020 in Stage IV/Metastatic Breast Cancer ONLY

I recently joined Club 4 after being cancer free for 14 years. At this time I am on Verzeio (200 mg 2x daily) as well as Faxlodex and Xgeva. I have noticed that an area that used to be painful, will completely stop and then I'll have pain in a different area of my back. At first it was my upper left area and now that pain is on the right lower side. I'm wondering what this means? Hoping it doesn't mean new growth as I literally envision this therapy working for me. Other than extreme fatigue, being out of breath and the dreaded D, I seem to be coping with the Verzenio (not saying I like it though). Can anyone shed any light on why the pain areas keep shifting? Thank you all.

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  • pajim
    pajim Member Posts: 2,785
    edited March 2020

    dibel, Welcome to the club! So sorry you have to be here.

    I wish I had some answers for you. I am on Piqray. Last Sunday I woke up with unbearable (unable to stand up and get out of bed) pain in my left lower ribs. Had to go to the ER to be checked out.

    They found no cause -- in fact the occult rib fractures I had are healing. But on Monday afternoon the pain moved to the right ribs, same place. What, huh? Then is mostly died. Even more weird. I'm still sleeping sitting up because breathing on my back hurts, but otherwise I can move around (carefully).

    I asked my MO whether tumor flare was a real phenomenon. I've never experienced it before but it's the most optimistic explanation I can think of. His response was "we can hope." The literature says that it is, but not much data around.

    Possibly what you are feeling is those cancer cells screaming and dying. We can certainly hope so!

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  • dibel
    dibel Member Posts: 161
    edited March 2020

    That's sure what I want to believe....very strange . But thank you for taking the time to tell me your thoughts. I hope you stay well with the virus scare.....the true meaning of solitary confinement for us.

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  • pajim
    pajim Member Posts: 2,785
    edited March 2020

    Oh yeah. I haven't left the apartment for more than a week -- that's when we went to the emergency room. My workplace has just extended "work from home" to the end of April which means just me and my DH and a bunch of video conferences.

    Hang in there!

    (P.S. Pain came back, now further along the right ribs towards the back. Sigh. I'd say my MO is going to think I'm weird but he already knows I'm nuts)

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  • dibel
    dibel Member Posts: 161
    edited March 2020

    Thank you and may your treatment continue to heal you.

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  • dibel
    dibel Member Posts: 161
    edited April 2020

    So an update on the Verzenio. They took me off it for 1 week to see how I would be feeling. Well, I felt wonderful for a week.

    They are changing my dosage to 100 mg 2x a day but I don't have the medicine yet so as of last night, I took 150 mg 1x a day as they said . Today, I immediately can see the difference. It's almost like I am not in my body...floating outside of it somewhere. What the heck is that? Also, I am breathless much more quickly. I'm heading out for a walk tonight so will see how I do. Has anyone had symptoms like this? He did tell me I can go down to 50 x 2 daily and the results are supposed to be same? I do want to stay on this med so am hoping for the best. I have to say the fatigue is probably the biggest issue for me.

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  • nopink2019
    nopink2019 Member Posts: 329
    edited May 2020

    I've been on kisqali, faslodex & xgeva for about 6months. I've had some skin breakouts (not exactly a rash, more scattered spots), but the last few weeks I've suddenly developed itches all over a few times, like I'm lying in a bed of biting bugs. I've taken benadryl and then slept it off. Think it could be Kisqali reaction to sun exposure as I've been in the garden piddling around? Anyone have this reaction?

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