Zoom Meet-up for Those With MBC: Place to keep chatting
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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
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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.
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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).
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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!
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Can't tell you how relieved we were to read this, illimae!
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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.
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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.
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Mae, in your pocket. I’m sorry you have to have the puncture. I will be thinking of you.
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Are most of you guys doing both Monday & Wednesday? I'm sorting out my schedules & seeing what fits...
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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!
Keep us posted... all of you. 0 -
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
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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.
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hope to see as many of you as possible tomorrow. Great, GREAT, group of people!
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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…
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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
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Welcome Lauren, join us anytime!
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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.
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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
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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?
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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”. 😁
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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.
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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.
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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.
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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 😁
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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.
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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!
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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
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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
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Jane, it was so good to see you. I'm sorry you're struggling. I hope you feel better soon.
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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.
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