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

moderators
moderators Posts: 7,685

This is a space held for our Zoom Meetup members to gather in between meetings for updates and support.

Join our Virtual Meet-ups!

For those with a diagnosis of metastatic breast cancer (MBC; also called stage IV)
Register: Mondays at 2:00 PM EST, Tuesdays at 8:30 PM EST, and Wednesdays at 4:00 PM EST

Young (45 and under) with metastatic breast cancer (MBC; also called stage IV)
Register: Thursdays at 1:00 PM EST

Metastatic breast cancer caregivers
Register: Tuesdays, Bi-weekly at 4:00 PM EST

We hope to see you at one of the meetups!

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Comments

  • kbl
    kbl Member Posts: 2,637
    edited June 2021

    I will be there. I hope we can get more to participate today!!

  • moderators
    moderators Posts: 7,685
    edited June 2021

    We too Medicating. Looking forward to seeing you soon.


  • thebar1957
    thebar1957 Member Posts: 5
    edited June 2021

    Thanks for the meeting today. I enjoyed meeting with everyone at the Zoom meeting.

  • woodlands
    woodlands Member Posts: 71
    edited July 2021

    I will be there.

  • a-friend
    a-friend Member Posts: 10
    edited August 2021

    Hey all,
    I have been out of pocket for a bit and need to get back on track. I was tested for COVID and the Flu, and luckily COVID was negative, but the Flu tested positive. Everything is on the up swing!! Does anyone know of meetings online or in person that are held in Katy, Houston, etc.? Just curious

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648
    edited August 2021

    a-friend,

    BCO has no formal in person groups but the Zoom call can be accessed by anyone, anywhere. It is not specific to a geographical area. Some folks have met up informally and I know we have quite a few members in the Houston area. Register via the link in the op and you’ll receive an email with the Zoom call info. I have yet to make the Zoom call but I always have good intentions 😊.

  • illimae
    illimae Member Posts: 5,519
    edited August 2021

    a friend, I met you on the zoom call and via FaceTime. As far as I know, there are know location specific meet ups. I used to go to an MD Anderson MBC group but it hasn’t gone back to in-person. I have a few friends I meet for lunch from a young with stage IV Facebook group but for BCO, the zoom is where it’s at. I hope to see you all there tomorrow.

    Also, I hope things are well and you were able to get the radiation stuff all worked out.

  • a-friend
    a-friend Member Posts: 10
    edited August 2021

    Illimae, yes I remember touching base with you and appreciate your help. The radiation on the brain and the eye is complete so now just waiting for the next step. My oncologist said it will be around the first of October before they test and see if the tumors have shrunk or no longer there. Just seems like a long time to wait, if maybe other gremlins have popped there heads up. I have a new appointment with MDA on the 26th of this month. Good to hear from yo

  • illimae
    illimae Member Posts: 5,519
    edited August 2021

    a friend, radiation works best over time. I usually have a follow up brain MRI a month or so after radiation but best results are usually 3-6 months out.

  • aprilgirl1
    aprilgirl1 Member Posts: 743
    edited September 2021

    Hi - I enjoyed joining the Zoom this week! I will be out of town on vacation on 9/13, have petscan/ct scan on 9/16 and fulvestrant injection the next Monday at 10:45am so most likely can't join on 9/20 :( If I get my injection early I can try to join on my mobile. Hope everyone enjoys the upcoming holiday weekend and I hope to zoom with you soon!

  • illimae
    illimae Member Posts: 5,519
    edited September 2021

    just a reminder…

    No zoom group today. Enjoy the holiday weekend and see you next Monday :)

  • kbl
    kbl Member Posts: 2,637
    edited September 2021

    I’ll miss everyone. I hope everyone has a great Labor Day. See you next week if I can make it. May have grandson.

  • illimae
    illimae Member Posts: 5,519
    edited September 2021

    Hi all, hope to see you later today on the call 🙂

  • kbl
    kbl Member Posts: 2,637
    edited September 2021

    I’ll be there, Mae.

  • seeq
    seeq Member Posts: 1,060
    edited September 2021

    Well, darn! I really thought I was going to make it today, but we had a painter in the house at exactly that time. One of these days, the stars will align themselves...

  • kbl
    kbl Member Posts: 2,637
    edited September 2021

    Hopefully we see you soon, See-Q.

    Just for everybody's knowledge from the question I had yesterday, because I hadn't started Medicare yet, I was able to switch from the HMO I signed up for to a PPO. I also had to tell the person signing me up that the Xeloda should be covered under Part B. He called Humana, and they said that sounds right. Lots of coordination. Now I'm still waiting for the Xeloda from my current health insurance carrier.after a week and a day because nobody does anything fast.

  • moderators
    moderators Posts: 7,685
    edited September 2021

    See you Monday, but PLEASE post your updates Medicating

  • kbl
    kbl Member Posts: 2,637
    edited September 2021

    Thank you, Mods. I sure will. I finally got the approval for Xeloda, but this is with my husband’s current insurance, not Medicare. That will be a whole ‘noter issue.

  • ohionana1605
    ohionana1605 Member Posts: 65
    edited September 2021

    I tried to edit my profile under targeted treatments to say Herceptin and Perjeta but it would only show one or other, not both.

    Be

  • illimae
    illimae Member Posts: 5,519
    edited September 2021

    Ohionana, I don’t remember exactly how I updated mine but I think I did Herceptin and updated, then went back and added Perjeta and updated.

  • illimae
    illimae Member Posts: 5,519
    edited September 2021

    Cross-posted


    Results: overall ok

    Brain MRI shows my existing tiny 1.9mm spot grew to 2.5mm in the last 3 months and I now have 2 new brats but they are too small to measure. We've decided to schedule gamma knife for early November for those 3 and anything else that might pop up in a month. Given my history of minimal slow growing brain mets and my general dread of gamma knife, I am happy to wait a bit on that.

    Body is still NEAD and the trial doc is very happy with the little scar left on my hip bone met after "radiation killed it good", his words, lol

    Brain mets are such a bitch but I'm very grateful to only be annoyed by them so far.

  • moderators
    moderators Posts: 7,685
    edited September 2021

    Illimae, great news on the NEAD in the rest of your body. We're bummed to hear about the growth of the brain lesion and the 2 new spots. But as always, you sound positive, and we're right here with you as you face the gamma knife once again! Sending big hugs and looking forward to seeing you on Monday so you can get the support from all your Zoom-sisters!

    --Your Mods

  • illimae
    illimae Member Posts: 5,519
    edited September 2021

    Thanks Mods! See you and the rest of the gang on Monday 😁.

  • kbl
    kbl Member Posts: 2,637
    edited September 2021

    I’m going to have my grandson on Monday, but I think my husband can handle him for an hour while I come to my meeting. Smile

  • seeq
    seeq Member Posts: 1,060
    edited October 2021

    I'm crossing my fingers that I'll be able to make it in Monday. We were traveling last Monday, and we're trying to sell our house - so showings take priority.... but maybe.

  • kbl
    kbl Member Posts: 2,637
    edited October 2021

    That would be great, SeeQ.

  • moderators
    moderators Posts: 7,685
    edited October 2021

    Dear illimae,

    Wow! Thanks for posting the link to this important story. We are glad that you were able to lend your voice and story to the article.

    The Mods

  • jsniffs
    jsniffs Member Posts: 136
    edited October 2021

    Wow, Illimae, thanks for sharing. As someone who was diagnosed in their mid-30s, I appreciate the importance of this write-up. Thank you for sharing your experience.

  • olma61
    olma61 Member Posts: 1,016
    edited October 2021

    Great write up, thanks for being willing to go public and tell your story, illimae. I’m seeing quite a few reports lately about the rising number of young women being diagnosed with BC. We need more than mammograms for early diagnosis, and of course, we need better treatments . Hopefully some answers lie in genetic testing, immunotherapy and other areas.

    You do have a great attitude and I’m happy for your good success with treatment - and dare I say it, congrats on getting over the hump of the median.