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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 October 2021
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    Am I the only person who has not gotten an email to today's meeting? Should I take this as a hint?SillyHeart

  • illimae
    illimae Member Posts: 5,652
    edited October 2021
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    bmp, no, it’s not a hint lol, have you registered?

    Mods, can you help?

    See you all in 5 😁

  • kbl
    kbl Member Posts: 2,793
    edited October 2021
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    It was so emotional for me today with our new member. I don’t know why, but I’m sure it’s because she’s so close in age to my daughter. I am so hoping she never has to deal with this horrible disease.

    I hope we see her again and she can ask any questions she has.

    Bmpntherd, I’m glad I wasn’t alone today showing my emotions. I saw others wiping their eyes as well. It’s so wonderful we can let out how we’re feeling.

    I was also glad to see Amy back as well as our regulars.

    Mae, thank you for asking about the Xeloda. I am surprised the week went so well with it. I am keeping my fingers crossed that it continues this way. I’m off this week from it.

    Hope to see everyone next week.

  • illimae
    illimae Member Posts: 5,652
    edited October 2021
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    KBL, I happy you’re not having problems with X but are also prepared for it. Hopefully, your week on/week off schedule prevents SE’s from building up.

    Great to see everyone today 🙂

  • star2017
    star2017 Member Posts: 370
    edited October 2021
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    Hope I can join you all one day. Would be nice to chat.

  • kbl
    kbl Member Posts: 2,793
    edited October 2021
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    Thank you, Mae. I appreciate all of your help.

    Star2017, I hope you do too. It’s such a great group.

  • kbl
    kbl Member Posts: 2,793
    edited October 2021
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    Hi, everybody. So my daughter decided to have genetic testing done, even though my brother and I, both with breast cancer, tested and came up with no genetic mutations. I expected hers would come back with none as well. I was shocked when it came back that she has a CHEK2 mutation. I thought, how could that be? She told me it’s in the Polish population. My husband is Polish. His mom died of lung cancer. Now I’m thinking maybe that’s why.

    Anyway, I have absolutely no information on this. I feel awful for her. She said she’s not worried, which I’m grateful for, but she learned so much sooner than I ever did about her risks. I learned I had a blood clotting disorder long after I had her, and she got tested before her son was born and had to do the shots to her stomach after he was born

    Now she has this knowledge that she may end up with cancer (let’s hope it skips her).

    I’m wondering if the Mods or anyone can enlighten me on this mutation. If anyone has this mutation, maybe you can tell me at our Monday meeting.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited October 2021
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    KBL,

    Sorry to hear about your daughter. Have you tried the search function to see what other members say about it? Since the mutation is not limited to stage IV, you might find info or get additional input if you look beyond the stage IV forums. Take care. BTW, I have good intentions but have only made one Monday meeting. I will aim for this Monday.

  • moderators
    moderators Posts: 8,287
    edited October 2021
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    Hi KBL! We're sorry to hear about this news. We hope these pages will help:

    Genetics and Risk, including info on CHEK2: https://www.breastcancer.org/risk/factors/genetics

    Testing Positive For Lesser Known Gene Mutations: https://www.breastcancer.org/symptoms/testing/gene...

    Genetic Testing section: https://www.breastcancer.org/symptoms/testing/gene...

    Hope this is helpful! See you Monday and we can discuss further!

    --The Mods

  • kbl
    kbl Member Posts: 2,793
    edited October 2021
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    Thank you, exbrnxgirl. Hope to see you Monday. I see the Mods have posted some info.

    Thank you, Mods. I knew you would know where to point me to information.

  • kbl
    kbl Member Posts: 2,793
    edited October 2021
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    Cross-posting. So it's only been one month, three Faslodex shots and two 7/7 doses of Xeloda. My CEA dropped from 8.5 to 5.8, my 27-29 dropped from 379 to 314. My 15-3 popped up 1 point, so I would call that stable. Let's hope Xeloda and Faslodex keep doing their thing and keep droppingdown to normal like other people have. Mine have never done that. I so want it to happen.

  • amontro
    amontro Member Posts: 185
    edited October 2021
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    Yesterday's zoom meeting meant a lot to me. As I said, I'm always looking for a reason to blame when I'm not feeling well. I woke up that way yesterday and this morning (ugh!). I feel like there is something seriously wrong with me - and there is! I have stage 4 and have poison infused into my heart every three weeks. I'm sure the heebie-jeebies will go away as they always do, after some time has passed.

    I want to thank you all for being so supportive on Zoom. You guys have your own challenges, but you always make time (and have heart) to listen to and advise others on their path with this terrible situation. See you next time.

  • amontro
    amontro Member Posts: 185
    edited October 2021
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    Oops! I almost forgot to mention that a few of you on Zoom spoke about night sweats.

    I thought that anastrozole caused this (along with body aches and pains). I've been on it for many years and, at this point in time, I get night sweats once a week, and it has nothing to do with my sleeping environment. I wake up drenched with a fan on and the window open. So, thanks again for pointing out the obvious for me.

  • illimae
    illimae Member Posts: 5,652
    edited October 2021
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    amontro, I keep popsicles on hand and have one if I find getting to sleep difficult due to night sweats. Works well and tastes great 😁

  • amontro
    amontro Member Posts: 185
    edited October 2021
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    illimae - Sounds like a great idea! - Anna

  • thebar1957
    thebar1957 Member Posts: 10
    edited October 2021
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    Hello to all,

    I'm sorry I've missed the last few meetings. My Mondays have been filled with work meetings so I have not been able to make the monthly meeting.

    I had a pet scan after 4 months of Ibrance/Faslodex which showed "excellent response to treatment" and "stable disease" I started Xgeva but my jaw started to hurt so we stopped it for now and will reevaluate later. I also was recently fitted with a sleep mouth guard for sleep apnea and we think the mouth guard is causing the pain. If so, we'll start Xgeva again.

    Back to life between petscans!

    Teri

  • kbl
    kbl Member Posts: 2,793
    edited October 2021
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    thebar1957, congratulations on the excellent scan results. It’s always such a relief to know the treatment is working. Hope to see you soon.

  • vbishop
    vbishop Member Posts: 332
    edited October 2021
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    Well, I am late to this party. Sorry ladies.

    I had the pleasure of being interviewed a couple of weeks ago for Breast Cancer Awareness. They wanted to talk to someone with MBC and how friends, family, and co-workers can support them.

    Check it out.

    Whoops! I Did It Again!: Pink - The Interview for Breast Cancer Awareness

  • living-with-cancer
    living-with-cancer Member Posts: 3
    edited October 2021
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    My oncologist recommended an Embr wave bracelet for hot flashes and night sweats. Has anyone tried this? It’s so expensive, so I’m hesitant.

  • moderators
    moderators Posts: 8,287
    edited October 2021
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    Hi Living-with-Cancer! We're glad to see you were able to join and post in the community!

    Can you tell us a little about this bracelet -- what's it supposed to do and why is your oncologist recommending it? Hopefully someone here has experience with this!

    --The Mods

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited October 2021
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    living with,

    I had not heard of this before so I googled it. It seems as if it's a personal thermostat to help cool or warm you. Although this is lovely, you are correct in that it's quite pricey. Why would he think you need this? As far as I can tell it is not related to cancer tx. It seems more like comfort item, which is very nice but again $350. is a lot of money. Here is their website:

    https://embrlabs.com/


  • seeq
    seeq Member Posts: 1,129
    edited October 2021
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    So, I've been very intrigued by this. My hot flashes (from the Anastrazole) are so bad that it interferes with my sleep,. I'd love to hear from people if it was truly effective. I'm a bit skeptical and would have to have pretty good confidence before shelling out that kind of money.

  • nola70115
    nola70115 Member Posts: 61
    edited October 2021
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    That is really cool. (No pun intended.) It might go on my christmas wish list.

  • illimae
    illimae Member Posts: 5,652
    edited November 2021
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    Quick update: The gamma knife went well and the pre-procedure MRI showed nothing new. Today I am just resting. I plan to join you all on Monday but my infusion is at 1:15 and WiFi might by iffy.

    The doctor with the needles was very nice, so I feel slightly bad for cussing so much but not really, lol

    image

  • moderators
    moderators Posts: 8,287
    edited November 2021
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    illimae, you have the right to cuss all you want!! Whatever helps to get through it. We hope to see you Monday, and are thinking about you!! Medicating

  • kbl
    kbl Member Posts: 2,793
    edited November 2021
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    Mae, I’m glad everything went as well as could be expected. I’m so glad the gamma knife went well and nothing new was showing.

    I may not be able to make it Monday. I’ll miss you all if I can’t

  • moderators
    moderators Posts: 8,287
    edited November 2021
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    And we'll miss YOU, KBL!

  • kbl
    kbl Member Posts: 2,793
    edited November 2021
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    Thank you so much

  • jsniffs
    jsniffs Member Posts: 136
    edited November 2021
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    Illimae - I was thinking about you on Friday. Glad it went okay, but wow, that is intense!! Holy moly. Glad you can relax and recover now. *Hugs*

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
    edited November 2021
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    I forgot to ask something during the Zoom call today. Are your infusion centers still using numbing spray before accessing your port? I went for a port flush yesterday and was told that they were no longer using the spray. Now, I’ve had my port accessed without the spray before and it really doesn’t hurt so the spray but it was a bit of a security blanket for me. The nurse suggested that I use a 5% lidocaine cream, OTC. This is not quite the same as EMLA which is 2.5% lidocaine and 2.5% prilocaine but should do the trick. Not a big deal but I was surprised that they no longer used the spray.