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How long have you been Stage IV?

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  • Greatly blessed
    Greatly blessed Member Posts: 14
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    Since December 2020. On Ibrance, Fulvestant and Zometa.

  • amel_83
    amel_83 Member Posts: 160
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    @beckymd congratulations! And thank everybody for their experience.

    I'm only 2 year in, 41 year old, and just feel like is been forever. First disgnosis in 2018 at 34.

    I'm not sure why but it feel like I can't even remember how it was to live without cancer…

  • beckymd
    beckymd Member Posts: 26
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    I have been on Capecitabine now for 8 months. Do have some bothersome side effects some days but have had a good response (reduction) in my liver lesion, so am trying to stay the course. Worse thing is loss of appetite and weight loss.

  • seeq
    seeq Member Posts: 1,111
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    3 yrs, 11 mos. De novo liver mets. Still on 1st line of treatment.

  • malleemiss251
    malleemiss251 Member Posts: 370
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    Coming up 9 months - I was dxed de novo with "innumerable" bone mets 14 August 2023. I am just about to begin cycle 8 of Letrozole/Ribociclib.

  • chico
    chico Member Posts: 194
    edited May 12
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    8 years Dx mbc but now sure probably right out the gate in 2004 so possibly 20 years.

  • more_cowbell
    more_cowbell Member Posts: 6
    edited May 9
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    I'm officially in year 3, but I think I had been metastatic for at least a year or two before it was found….probably more. Still on first-line treatment.

    I have severe scoliosis and have struggled on and off since high school with back pain from it. I was diagnosed early stage in 2006 at age 29 and it had been 15 years. I was at low risk for recurrence after it being so long ago and the fact that I was 1mm shy of being Stage 1 with no node involvement. It looked to be a perfectly contained little marble back then. I'm 47 now. I was 44 when it came back.

    I needed to get a nerve ablation for the pain from scoliosis and my orthopedist needed an MRI to verify the nerve he needed to hit. Lo and behold, he not only found the problem disk, but he also found innumerable mets to my lumbar spine. Ha! Poor guy. He was white as a ghost and bumbled in the door. I knew it was bad immediately. In fact, I knew it was cancer as soon as he looked at me. I had seen that look before on a radiologist 15 years earlier.

    Anyway, my first official CT has so far been my worst. Abraxane really kicked in after about 3 months and everything just kind of went dormant. I had a little "rough patch" on my right pleural lining that was barely visible, but turns out it was the reason for what I thought was my asthma flare-up. It was actually a little bit of a pleural effusion from it and it was indeed a little cluster of MBC cells.

    I feel great, honestly, all things considered. I felt better almost immediately after my first chemo cycle. Two cycles later, I had virtually no back pain. I feel fortunate. I think I'll make it to 5 years. The Onc doesn't like to make predictions on shelf-life, but he is optimistic I'll be around for a while yet.

    When/if the Phesgo and Ibrance kind of maintenance regimen fails, Enhertu is my next stop. It's been on my radar since my initial diagnosis. I was entered into one of the DESTINY trials, trialing it as a first-line treatment for MBC vs chemo, but sadly, I was rejected. My IHC wasn't high enough for the trial, even though my FSH was. Then, they tried to enroll me in a DESTINY trial, trialing the same Enhertu vs Chemo as first-line, but for HER2Low, but my FSH was too high to be considered low for the trial purposes!! Hahah! Trials are so picky.

  • moderators
    moderators Posts: 8,185
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    @more_cowbell, we're sorry that you find yourself here after all these years, but we're glad you've reached out to our community for support. Besides these wonderful discussion forums, we wanted to recommend also our Virtual Community Meetups, where you can connect with others and chat in real-time. You can find more information about it here: Virtual Community Meetups. It would be great to see you there as well! Let us know if there is anything we can assist you with. We're here for you!

    Sincerely,

    The Mods

  • more_cowbell
    more_cowbell Member Posts: 6
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    Thanks @moderators! I appreciate it. Figured I might as well join since I've creeped around for so long. :-)

  • AJ
    AJ Member Posts: 219
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    @more_cowbell , I highly recommend the zoom meetings. I mostly attend the Wednesday meeting and have gotten a lot of support and good suggestions!

  • dulcea
    dulcea Member Posts: 140
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    You all give me hope! Thank you for sharing!