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Zoom Meet-up for Those With MBC: Place to keep chatting

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  • bmpntherd
    bmpntherd Member Posts: 24
    edited May 2022
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    i agree, sharing bad news is difficult but so important. we all come to really depend on and love each other. let us know if you need anything

  • kbl
    kbl Member Posts: 2,797
    edited May 2022
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    Mae, we are definitely a Zoom family. I would hate to go too long without being at our meeting. You are such a support, and we are all here to support you. Hugs.

    Donna, I missed you yesterday. I hope you're doing okay. Hugs to you as well.

  • illimae
    illimae Member Posts: 5,657
    edited May 2022
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    So, here’s a surprise, the spine MRI was clear. I hardly believe it, I’m a mix of pleased and skeptical. Not sure if a lumbar puncture is next or we are moving on as no or unconfirmed lepto. Radiation is an option but riskier due to some overlap with previously treated spots and a switch to Enhertu seems almost certain but no official word yet.

    In other news, today is national eat whatever you want day. I’m considering the possibilities. DH wants a cheesecake/pecan pie sandwich (he’s diabetic, so no chance).

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited May 2022
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    I feel like a lurker but hope to join the Zoom family soon now that I am no longer working. I just need to test my system (no work computer now) and get through the flurry of appointments as we treat new bone mets in my c-spine/thoracic spine that are behaving badly.

    Mae, so pleased with the clear MRI. Hooray!

  • moderators
    moderators Posts: 8,289
    edited May 2022
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    Can't tell you how relieved we were to read this, illimae!

  • illimae
    illimae Member Posts: 5,657
    edited May 2022
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    Well, not so fast I guess. There’s still suspicion, full lepto work up next week including lumbar puncture, either way Enhertu is next, hopefully that shakes things up.

  • seeq
    seeq Member Posts: 1,132
    edited May 2022
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    Mae - I know you were skeptical of the MRI results, but it's still a bummer. In your pocket for fir the work up next week.

  • kbl
    kbl Member Posts: 2,797
    edited May 2022
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    Mae, in your pocket. I’m sorry you have to have the puncture. I will be thinking of you.

  • moth
    moth Member Posts: 3,293
    edited May 2022
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    Are most of you guys doing both Monday & Wednesday? I'm sorting out my schedules & seeing what fits...

  • moderators
    moderators Posts: 8,289
    edited May 2022
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    we too are full-on pocket duty. Enhertu is a very good treatment for so many.

    Moth, this is mostly a Monday group, with some overlap! Medicating Keep us posted... all of you.

  • kbl
    kbl Member Posts: 2,797
    edited May 2022
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    I mostly do Mondays but pop in Wednesday when I can’t make Monday. There are a few I’ve seen also from the Monday group on Wednesday

  • nkb
    nkb Member Posts: 1,561
    edited May 2022
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    I plan to try to join some Mondays- I seem to forget- I go to the lab on Mondays also.

    heading out on trip tomorrow - so will be in a few weeks.


  • moderators
    moderators Posts: 8,289
    edited May 2022
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    hope to see as many of you as possible tomorrow. Great, GREAT, group of people!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited May 2022
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    I’m going to try to join from my MacBook tomorrow. Let’s see if the technology gods smile on me. For some reason I have never been able to get Zoom to work for me on my iPad. Go figure…

  • LI77
    LI77 Member Posts: 68
    edited May 2022
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    Do you mind if I join you all one of these weeks? I'm a newbie, diagnosed de novo in late January/early February of this year. I posted a bit and then had a vertebral fracture that took me out for a while. I'm back to some semblance of normal, so it would be nice to join and stop being a lurker ;)

    Lauren


  • illimae
    illimae Member Posts: 5,657
    edited May 2022
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    Welcome Lauren, join us anytime!

  • kbl
    kbl Member Posts: 2,797
    edited May 2022
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    I second Illimae. Welcome.

    For those on today’s meeting, here is a picture of my rider on my life insurance that we talked about. I know we haven’t gotten to the discussion, but if you want to ask questions, please post here or private message or email me at the address that you receive in today’s notes.

    I hope this helps with my term life insurance rider for those with Stage IV.

    image

  • kbl
    kbl Member Posts: 2,797
    edited May 2022
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    I also forgot to let everyone know that I donated three boxes of unopened Ibrance to Sirum.org. It cost me $10 to ship

  • cowgal
    cowgal Member Posts: 625
    edited May 2022
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    Mods - Any progress being made to get a meeting time that will work better for those of us that still work or is that a dead end for now?

  • illimae
    illimae Member Posts: 5,657
    edited May 2022
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    I assume we’re not zooming on the holiday, so here’s a quick update.

    I’m out of the hospital and managing the pain triggered by the lumbar puncture. The results of that were thankfully clear “no malignant cells identified/benign”. 😁

  • cowgal
    cowgal Member Posts: 625
    edited May 2022
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    illimae - I did not know that you were in the hospital. Glad to hear you are out and that you got good news on your lumbar.

  • going2beatthis
    going2beatthis Member Posts: 167
    edited May 2022
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    Illimae, missed you on Monday. So glad to hear that the results of your lumbar puncture " were thankfully clear "no malignant cells identified/benign" ". That is fantastic. Hope the pain subsides quickly.

  • kbl
    kbl Member Posts: 2,797
    edited June 2022
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    A while back I had made a video for Lobular Breast Cancer Alliance's Here All Year program. They did a Moonshot vide to send to the Biden administration. I was so surprised to see myself in that video. Here is the link if you're interested.

    https://m.youtube.com/watch?v=xNoXveXGC2g&noapp=1

  • illimae
    illimae Member Posts: 5,657
    edited June 2022
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    I’ll do my best to make it today but I’ve got a shed (future mountain top beach bar!) being delivered and installed today and their ETA is inconveniently around 1pm my time.

    Sending a big, happy hello to all in case I don’t see you all later 😁


  • kbl
    kbl Member Posts: 2,797
    edited June 2022
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    Aw, we missed you.

    I was a blubbering mess today, but I want you all to know you helped. I felt much better after and talked to my daughter. She totally gets I need breaks from my grandson. Now it’s up to me to make it happen. If I continue on, I will only have myself to blame. I’m just not physically capable of keeping up the pace of playing so much. My body is screaming at me. Thank you, again. I appreciate you all.

  • going2beatthis
    going2beatthis Member Posts: 167
    edited June 2022
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    Mae,

    We missed you. Hope you are feeling a lot better and are able to eat again.

    How is the new bar? Time to stock it and enjoy!

  • moderators
    moderators Posts: 8,289
    edited July 2022
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    Hi, everyone!

    We wanted to remind you all that we will not be meeting this upcoming Monday, July 4th due to the holiday. Wehope you all enjoy your weekends!

    - The Mods

  • JaneNJ
    JaneNJ Member Posts: 5
    edited August 2022
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    Hello all,

    I hadn't realized till todays Zoom meet up that there was a forum specifically for this group - yay! Glad I found it. I'm to generally active in the forums but this now will be great to use to give updates, say hello etc. Thank you to those who were on todays meet up - you really helped me a lot!


    Jane

  • kbl
    kbl Member Posts: 2,797
    edited August 2022
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    Jane, it was so good to see you. I'm sorry you're struggling. I hope you feel better soon.

  • illimae
    illimae Member Posts: 5,657
    edited September 2022
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    Hi all, here’s an example of the pups bedtime planking routine. Pig was under the covers when I said it was bedtime and when I pulled them off he was already in position, lol and ready to be carried off to their crate.

    image
    image