Zoom Meet-Up Bonded by Breast Cancer: Place to Keep Chatting
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Good to hear from you. Life is busy and I miss your updates too as you live life through it all. Science continues to give us new opportunities for a better life. My sister on her own journey says i like pills, she does not. Just recently she got one that is after treatment one that focuses on stopping any cancer cells remaining from multiplying. I forgot the name. She finally said something like if she stops the pill, it could come back with a vengeance. It not cancer. I do not say the word if she does not.
I am glad these meetings continue so we have this beautiful point of refence for each of us that have kept coming back.
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I'm curious to know if I even need to stay on my AI. I'm on five different pills to control side effects and have to get liver bloodwork done every 90 days (which I don't do- because I'm worried it'll come back bad and I'll have to go off Veozah). I just don't know if it's worth it for the reduction in 10-year survival. I don't see my onc. until January but I may see if I can get in sooner.
I'm going to bite the bullet and finally get the bloodwork done tomorrow, and the path lab I go to does results almost immediately. I'll keep you all posted!
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In answer to your question, my diagnosis is close to yours. I have BRCA2 as well. Blood tests are sooooo important. A blood test led to me being tested for MDS this time 2 years ago. I could not think about the AI as i had a bone marrow transplant in April of 2024. I am 3.5 years in with Letrozole. A blood test is my vote and some questions to your oncologist. You are young. I am 65. I had my fallopian tubes and ovaries out. 10 years? I feel for you and your choice. I think you will be glad you bit the bullet.
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Thank you for the feedback! I'm going to talk to her in January to see what my options are, even if it means I take a break or go on something else. :)
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@klrtts3p are you the Lisa from our Monday nights? I’m Catherine W. If so, you’ve heard that I decided to stay on letrozole after a lot of questioning whether the side effects were reason enough to try a different AI or stop altogether. While I don’t enjoy the idea of enduring the side effects for anther 22 months, the fact that I’ve started counting the time in months rather than years does give me some solace.
@katg Here I am at 4:00 am after putting in a 12-hour day and I can’t sleep! I’m officially one of the “REM Gals” (Ridiculously Early Morning Gals). I think that’s what we should call ourselves.
I’ve been obsessed with getting as much done on my “Mrs. Billings” quilt before my February retreat with my favorite quilting ladies, including the designer of the quilt. I’ll be celebrating my 4-year anniversary then too. I’m looking forward to celebrating with them. There isn’t a single one of them who hasn’t been touched by BC either directly or indirectly and they all live life with gusto.
Here’s a photo of the topper so far…don’t know why it is so fuzzy. The original image is really good. 🤨
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@kathrynw1thasea yep that's me! I need to see when I actually started taking it, but regardless I think my oncologist will want me to be on it for 10 years instead of 5 because I was diagnosed at 40. I messaged her to get an appointment to talk about options. I'll keep everyone posted!
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Also realized I forgot to update bloodwork results. Everything looked good; a couple liver levels were slightly elevated since April, but all within normal range. Triglycerides were still high so they added another cholesterol pill to my list… I'm now taking 7 meds over 9 pills, not including the supplements.
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Lisa, sounds familiar…I too have two meds that consist of 2 pills each. There’s nothing quite like swallowing a handful of pills first thing in the morning and last thing of the day. Oh, I forgot the new one that’s 3 pills a day. Some days when I feel a bit queasy around 2pm, I have to ask myself if I took the morning pills. There’s one medication I have taken for decades that makes me very ill if I skip a couple days. Recently I’ve noticed it only takes a late dose to start the stomach upset. Fun!
How is the kitten doing? I’ve thought about being a foster mom for a dog, but I’m allergic to most breeds. Welsh corgis are the breed I’m devoted to and don’t seem to be as allergic as long as they get bathed when they get “doggie”, but they don’t often come up to foster.
I had a big deadline on Monday so I missed the last meeting. I’ll try to make the next one. See you soon.
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@kathrynw1thasea - she's doing well! She's at the vet today getting an ultrasound on her kidneys to hopefully figure out why she's drinking so much water and peeing so much. I've also asked them to re-do her bloodwork because the excessive drinking started about a month after she had her bloodwork done. I'm hoping it's just diabetes or residual side effects from toxoplasmosis (which they think she had and was treated for). I fostered a mom and her three kittens and sobbed when they got adopted but then was ok. And we ended up adopting mom lol.
Met with the oncologist today and she's letting me take a break for 6 weeks and then I'm swapping to tamoxifen. I have a follow up with her in January to see how it's going, so fingers crossed it goes well!
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Hi all, I wanted to let you all know that Beckie passed away last night. I had messaged her on Facebook last week to see how she was doing and someone responded to me late last night that she passed. I will also update at the Friday Bonded meeting, but am hoping the @moderators will see this and update as well.
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@klrtts3p thanks for letting us know about Becky. That one hits hard. I have so many thoughts and emotions that I can’t put into words.
I wonder if there is a way for us to reach out to her family and friends as a BBBC group to show our support.0 -
@moderators is there any way we can send a message or flowers as a group to Becky’s family and friends?
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This is heartbreaking news, as Beckie was a very well-loved member in our Community. Thank you, @klrtts3p and @kathrynw1thasea for reaching out. We're trying to get in touch with Beckie's loved ones and will update as soon as we can.
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I miss Becky. I had a friend who passed this last week thankfully in her sleep. Pancreatic cancer that went many places, but like Becky, she never gave up.
I finally had time to log into tonight to the meeting. I got the invite and hit join. I did try on my work desktop first, but i forgot i have not installed the camera or the microphone. So, I found I was locked out again. It is either a removal by the moderator, or zoom is set to not let someone in after one try. I was never let in on any device. I am not the only one it seems. Do they have a maximum number of people set for the meeting?
I am not in treatment, so I will go to my other sites to update. I had started on bc.org and found zoom such a resource tool, but this zoom trouble is bugging me.
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are we not meeting today (12/15/25). I can’t get into the meeting.
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@katg There must be something wrong with the zoom tonight. I’ve also tried multiple times and on two different devices without success. Maybe they canceled the meeting and forgot to tell us?
I wish they would use Microsoft Teams instead of Zoom.
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@moderators Was there an issue with Zoom tonight? There are at least 2 of us who could not get it to work.
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Winnie messaged me from my email i could not get on. Not sure she understood that it kept saying "waiting for host". That usually takes a couple seconds to be admitted. Usually, one cannot join if they have been removed as i once was from the new moderator. I do hope someone from the bc team will let us know.
I would not want a new person to reach the never ending "waiting for host".
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Hi @katg and @kathrynw1thasea, we are so sorry you weren't able to get into last night's Zoom meetup. We've had reports from 3 members who weren't able to get in, and we're trying to look into what happened. Last night we had many more attendees than usual, so we're wondering whether the waiting room might've "maxed-out", but this would seem unlikely. Again, we're so sorry for the frustration! We hope we can see you both at our next upcoming meetups.
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Mindy and Margaret in Florida
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I just learned about Beckie passing. So sorry to all her family and friends. She was an incredible person who was a light in this world. She will be greatly missed!
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