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Biopsy back, begin medication tomorrow

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claireinaz
claireinaz Member Posts: 693

Hi all,

I found out it is a return of ILC-ER+, and it looks like a spot got into my bladder as well as peritoneum and lung, hence my urinary tract issues I've been dealing with since April.

My MO said it is slow growing (grade high 1/low 2) which gives me a bit of hope right now. She also said it isn't moving very fast since I don't have any other side effects other than bladder issues. It's Mayo, and I believe her because it's the only hope I've heard for weeks.

Apparently there are mutations that look like, if Verzenio/Fulvestrant doesn't work, can lead to other targeted therapy. Let's hope I don't have to resort to that.

I have labs on Friday and then my first injection. I begin the Verzenio tomorrow a.m.

Fingers crossed I can still hike and do yoga through all this and that side effects are manageable. Hubs and I are headed to the Grand Canyon today (we live close) to hike a bit and as a kind of ritual action between stopping Aromasin yesterday and beginning Verzenio tomorrow. It feels important that I mark this new period in my life in a way that feels empowering.

Claire in AZ

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  • kaynotrealname
    kaynotrealname Member Posts: 422
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    It sounds like about good as news as you can hope for, Claire. I hope you tolerate the medicine well and continue on with life. Thanks so much for the update.

  • claireinaz
    claireinaz Member Posts: 693
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    Thanks, Kay. I think my MO is figuring out I need sciency hope every time I talk to her. I've written notes to her about how I need information shared to me, etc.

    I'm getting tx at Mayo, and so far I've found all employees are really good about speaking to me, esp. if I tell them (in writing) beforehand I have extreme medical PTSD from previous experiences with cancer in my life.

    Those little bits of dr. reassurance allow me to better share the news that I've recurred with my only child (daughter), who lost her dad to pancreatic cancer. I have to give her some hope when I tell her. She and her guy are celebrating their first Christmas in their new house, and I am not going to break the news to her until after the 25th. 6 years ago her dad was getting his dx, and this is a real trigger time for my kiddo.

    I dread telling her, but I have to. Not telling immediate family members has turned into a real burden these few weeks. It's hard to pretend after a while though I'm a pretty good actress ;) She is terrified I'll die, so this will be a blow. I cry just thinking about it and the hearts I'll break and the sadness I'll bring.

    I begin Verzenio this a.m. and injection scheduled for day after tomorrow.

    Claire in AZ

  • kaynotrealname
    kaynotrealname Member Posts: 422
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    I'm so sorry, Claire. I hate that this burden is on you. It's an awful thing to hold. I hope that once you tell people that some of it is lifted as you adjust to a new normal. Maybe suggest your daughter get into therapy to help deal with it all? I find consistent therapy very helpful in processing the consistent changes in my life.

  • claireinaz
    claireinaz Member Posts: 693
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    Oh gosh, I wish she would get into therapy. I've gently pushed her for years to find a counselor to talk to about her PTSD from losing her dad.

    She hasn't as far as I know, yet. You can lead the horse to water… sigh.

  • ethereal_beyondness
    ethereal_beyondness Member Posts: 1
    edited December 2023
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    Hi, Claire. I am new here and I just wanted to say I am sorry to hear your mets have returned. I have been on Verzenio for the last six months and the biggest side effects I had to contend with were diarrhea the first couple of months and trouble falling asleep at night. I hope you have no problem with the Verzenio and that you get great results!

  • moderators
    moderators Posts: 8,285
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    @ethereal_beyondness Welcome to our community! We're sorry for the reason, but it's wonderful to have you here, and we hope this space becomes a source of comfort and information for you. Please let us know if you have any questions for us, we're always here! 😊

    The Mods

  • claireinaz
    claireinaz Member Posts: 693
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    Thank you mods and ethereal, I am hoping the combo Verzenio and Fulvestrant will knock this recurrence back. My MO seems pretty sure it will work. Still terrified but, as in my first dx, I'm less so now that I'm doing something (via science) to fight back.

    Claire