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

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  • tanya_djamila
    tanya_djamila Posts: 1,612

    kbl Rose seeq I’ll miss you all Monday.
    Sad to lose Teresa. It always seems so swift. SondraF too.

    KBL I too appreciate knowing rather than assuming.
    I hope to see Legina next Monday.

    Take care all.

    Tanya

  • Rosebessie
    Rosebessie Posts: 159

    @tanya_djamila I've missed you but I know you're busy with family. Love abd hugs

  • Rosebessie
    Rosebessie Posts: 159
    edited May 25

    @kbl i totally agree with you that knowing the state of our colleagues in the group is very important, especially when they're in a health crisis and suddenly fall off the grid. Like friends, once connected we share not just our treatment progress, but also our work, family, social, mental, emotional, experiences. We laugh together and cry together, and meet physically when the chance presents itself. I remember my excitement when @moderators Melissa visited Kenya. So, @kbl thank you again, for checking up and updating us on anyone who goes MIA. As for being off treatment but doing well..…it's a joy, a relief and a blessing you're still here with us..…🙏🏻🙏🏻❤️❤️

    I'll miss everyone this week but looking forward to next week.

  • kbl
    kbl Posts: 3,180

    @Rosebessie You are definitely a highlight on our meetings. The fact that technology has made it possible to know you is so amazing.

  • rlschaller
    rlschaller Posts: 728

    Hi all, am on campus today , Monday 6/2. Might not be able to make the Monday zoom. Hugs to all - Rhonda

  • aj
    aj Posts: 387

    @illimae , that looks great! Can’t wait!

  • rlschaller
    rlschaller Posts: 728

    lol.. awesome.I really enjoyed the books, and love Helen Mirren! What fun.

  • illimae
    illimae Posts: 5,915

    @going2beatthis Hi Fay, I didn’t see a message about Enhertu but I’m happy to answer any questions you have :)

  • rlschaller
    rlschaller Posts: 728

    Hi all, as I mentioned at todays zoom mtg, I will not be able to attend our Monday zoom mtg on a regular basis anymore. I told Melissa and Winnie already, the mods. As work demands, at least for now. Know I have loved getting to see you all, and getting to know you in real time. I will post here, and on all the threads I am involved in of course. Sending love and hugs to all, for now and always. Stay in touch ! Here is my email as well Rhonda.schaller@gmail.com. Rhonda

  • illimae
    illimae Posts: 5,915

    My brain MRI was good, nothing new. See you all next week 😁

  • going2beatthis
    going2beatthis Posts: 292

    Great to hear Illimae!!

  • kbl
    kbl Posts: 3,180

    @illimae I’m so happy and was hoping to see this great news. 💕

    For those not on the meeting today, Susan wrote me this past Wednesday and sadly had been diagnosed with leptomeningeal disease. I have not been able to reach her since Thursday of last week. She had told me they had given her two weeks, so I’m not sure what is happening. My heart hurts, once again. We had a beautiful rainstorm tonight, so I’m dedicating this rainbow to Susan.

  • illimae
    illimae Posts: 5,915

    Beautiful pic, KBL.

    Thinking of Susan and all she’s been and currently going through.

  • Rosebessie
    Rosebessie Posts: 159
    edited June 17

    @illimae its wonderful to hear all is well with you. @going2beatthis im do sorry, that's a lot for one day. I pray it all went well.

    @kbl , thanks for the update on Susan. I'm praying for her.. She's been through so much jn the last 2 years. God bless her gentle soul and protect her from more pain.

  • rlschaller
    rlschaller Posts: 728

    Kris - Beautiful rainbow pic! My heart hurts for Susan, May she find peace. Lots of hard news these past few months. Fay - I Hope your dentist appt went painlessly 3 cavities , oy veh !
    Illimae - great news about your MRI. Rose- hope you are feeling well.
    My radiation burns have healed well and those Mets are gone. I had my second Doxil infusion, skin Mets stable for now. Sending everyone hugs and love, Rhonda

  • going2beatthis
    going2beatthis Posts: 292

    @rlschaller - Made it through yesterday. My cavities ended up being 1 upper left and 2 upper right teeth. My dentist was able to do all 3 in about 40 minutes and yes, it was painless. Only downer was that it took the Novocaine almost 4 hours to wear off, not 2 as my dentist had said!!

    So glad to hear that your radiation burns have healed well and that your skin Mets are stable for now.

  • tanya_djamila
    tanya_djamila Posts: 1,612

    KBL I love the rainbow. Susan is in my heart. I’m going to light a candle for her today to remind myself to think about her.
    Tanya

  • seeq
    seeq Posts: 1,262

    I am so sad to hear of Susan's progression. It's just awful news. I hope she can feel the love we're all sending. Beautiful rainbow pic, @kbl.

    @illimae Great news on your scans!

    @going2beatthis I'm glad your dentist appt was relatively quick and painless. I had to cancel my dentist appt. We extended our weekend trip by one day and I woke up with a cold on dentist day. It's the first time I've gotten sick after travelling.

    I hope to be on Monday's call for a little while. See you all then.

  • going2beatthis
    going2beatthis Posts: 292
    edited June 22

    @seeq - hope your cold is better.

    Was hoping to be on Monday’s Zoom, but now Monday has become a 2 appt day after speaking with my Rad Onc on Friday afternoon. Morning is the installation of my port (starting Enhertu first thing Tuesday morning). At 2:30 will be doing my simulation and having a mask fitting in prep for radiation to my mandible (both right and left side) since she believes that is what is causing the numbness to my lips and both sides of my chin. As for my Mets to my sphenoid bone, calvarial and spine, they want to wait till I have 2 Enhertu treatments before redoing my MRIs. Hoping I have better luck with the Enhertu than I did with Faslodex.

    See you on Wednesday. Like @rlschaller when she was on Enhertu, I don’t plan on having any nausea.

  • rlschaller
    rlschaller Posts: 728

    @going2beatthis when you get your port, make sure to ask them to prescribe lidocaine cream (numbing cream), if they have not yet done so .You put that on the port the morning of the infusion, so when they access you for the infusion you don’t feel a thing. I love my lidocaine cream ! When I had my port put in, I also had my infusion 2 days later. I needed Tylenol in the beginning as well, as it ached some while it was healing. Just fyi. Will be wishing you well.

  • seeq
    seeq Posts: 1,262

    @going2beatthis we'll miss seeing you on Monday. That sounds like a busy day. I'm sure you're anxious to get rid of that numbness around your mouth. Enhertu has worked so well for so many people - let's add you to the list. :)

  • going2beatthis
    going2beatthis Posts: 292

    Thank you @rlschaller and @seeq 💗

  • tanya_djamila
    tanya_djamila Posts: 1,612

    Good evening ladies

    My mom and grandson are visiting with me while we’re in the middle of a complete bathroom renovation. I hope to get back to our meeting soon.

    Tanya

  • kbl
    kbl Posts: 3,180

    Miss you, Tanya. That’s got to be fun with a bathroom renovation. So glad you have your mom and grandson, though.

  • going2beatthis
    going2beatthis Posts: 292

    @kbl - glad you had a really great birthday and was able to enjoy lunch and the beautiful outdoors. 😘

  • aj
    aj Posts: 387

    @kbl , happy birthday!

  • kbl
    kbl Posts: 3,180

    @AJ Thank you.