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Looking to connect with other young ladies with MBC

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Hello

I’m new here, I’m 33

Diagnosed in 2022 stage 3 DIC, 5/19 axillary lymph node involved, ER+, HER -. I did 5months chemo, double mastectomy, radiation. I’m now on verzenio and anastrozole. I fell well so far. On my recent routine blood work my ca 27-29 goes up from 26 to 44

Unfortunately Scans show multifocal bone metastases. Waiting for bone biopsy before starting treatment. I need some hope, suggestions. I’m really devastated

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  • aprilgirl1
    aprilgirl1 Member Posts: 778
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    Fighter00, I'm sorry you are waiting for a bone biopsy :/ there are some great mbc zoom groups and one is for people under 45.

    look for the pinned post at the top of the stage 4 pages for the group registration . You will find great support there or in the stage IV discussion groups .

  • fighter00
    fighter00 Member Posts: 36
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    Thank you @aprilgirl1

  • sf-cakes
    sf-cakes Member Posts: 559
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    Hello fighter00, I'm sorry you're dealing with all this but glad you found this site. Do you know when your bone biopsy will be? I had one in 2021 when I was first diagnosed, it does take a while to get results - something about the substance in our bones taking longer to get results.

    I had radiation to bone mets, which has worked to effectively stop the cancer, but I do think the option of radiation depends on how many mets can be radiated at one time.

    I'm about 20 years older than you, so I don't think I qualify as "young" anymore, lol, but aprilgirl's suggestion about the support groups for under 45 is a great one!

  • fighter00
    fighter00 Member Posts: 36
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    Thank you @sf-cakes for your reply. I’m scheduled for the biopsy yet. Still waiting the call from the scheduling department

  • fighter00
    fighter00 Member Posts: 36
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    You’re very young @sf-cakes and I’m glad to connect with you

  • roareus
    roareus Member Posts: 68
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    I am sorry you have to go through this @sf-cakes.

  • moderators
    moderators Posts: 8,184
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    @fighter00, as mentioned, here is a link to our Young with MBC meetup registration — we meet bi-weekly on Thursdays at 1pm ET. The next meetup is February 8. We hope you can join us!

    —The Mods

  • alexisdesai
    alexisdesai Member Posts: 2
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    @fighter00 I am also a thriver with MBC diagnosed de novo, (HR+/Her2-) at 38, with mets to the bone. After chemo AC -T, I started Kisqali, letrozole and Lupron shots every three months. Once my dental work is complete, I will be starting something to strengthen my bones and hopefully keep the bone away. Chemo didn’t do much as far as getting rid of my cancer, it did shrink my bone mets and get rid of cancer in the one lymph node, but my 5.5cm breast tumor didn’t budge in my May 2023 scans.

    I started Kisqali + letrozole in June 2023 by my August 2023 scans, my bone mets were completely gone, and my breast tumor shrunk down from 5.5cm to 1.6cm! I had MSK and NYP radiologists look at it. By November 2023, I was NED, no evidence of cancer on my scans. My scans in March 24- continued to show the same.

    Of course these medications do not make you feel great and my bones and joints hurt all the time, I’m always tired and forgetful, but I live off the natural high I have no evidence of cancer! They positive outlook doesn’t count, but it sure makes my days feel 💯 % better!

    check out the group or app “breasties” they are also a great resource for metastatic disease. Sending you all positive vibes- DM if you want any information. I’m new to this organization. You got this, remember how strong you are, always.

    💗 🩷💗🩷

    Alexis



  • fighter00
    fighter00 Member Posts: 36
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    thank you @alexisdesai. You give me hope. I’m on falsodex, lupron, xgeva and waiting for truqap to get approved from my insurance. I’m feeling good only some bone pain sometimes and goes away with Advil. Hope you stay NEAD for very long time

  • cure-ious
    cure-ious Member Posts: 2,756
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    fighter00- As you probably know, cancer restricted to the bone can be very responsive to endocrine therapy and has a better survival than some of the other subtypes. I guess the genomics testing showed a PI3KCA mutation (hence the capivasertib) - if so, you should know that Celebrex or aspirin is also a good inhibitor of PI3KCA and might be worth adding to your regimen, in my case PI3KCA mutation and bone mets) adding Celebrex dropped the tumor marker readings back to normal range