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

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  • going2beatthis
    going2beatthis Member Posts: 167
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    @seeq Thx for your thoughts. We are ok. Fortunately our driveway is sloped towards the street. Tiday was our 1st day of sun and blue skies in a week.

  • kbl
    kbl Member Posts: 2,793
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    @illimae I missed you yesterday. I hope your scans went well.

  • illimae
    illimae Member Posts: 5,652
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    Hi there ladies, scans and brain MRI were all good, no active cancer anywhere. Heading home tomorrow, see you all on Monday.

  • moderators
    moderators Posts: 8,287
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    Woot, woot @illimae 😍!!!

  • going2beatthis
    going2beatthis Member Posts: 167
    edited June 18
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    Great Illimae!!

  • kbl
    kbl Member Posts: 2,793
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    @illimae I’m so happy for you. I am so thrilled that Enhurtu has been the medicine for you. Have a safe trip.

  • seeq
    seeq Member Posts: 1,129
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    Yay!! Clear scans are the best!!

  • Rosebessie
    Rosebessie Member Posts: 78
    edited June 22
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    @illimae that's wonderful news!! Have a great weekend 🤗

  • illimae
    illimae Member Posts: 5,652
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    Ok my Florida friends, it’s down to two Airbnb locations. Both have pools and entertainment areas and neither are beach front. Cape Coral on the Gulf has Fort Myers and Sanibel island family close by for a day trip. Cutler bay has Biscayne bay nearby but it doesn’t look like we’d want to swim there and I don’t know what good beaches are in the area. All opinions are welcome, thanks.

  • going2beatthis
    going2beatthis Member Posts: 167
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    @illimae - As much as I would love to see you in person, there is really no contest between the two. Hands down Cape Coral. Close to beautiful beaches... Sanibel, Captiva, Fort Myers.

    Didn't hear when are you planning to go. Hopefully not during hurricane season.

  • illimae
    illimae Member Posts: 5,652
    edited June 25
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    @going2beatthis The dates are February 18-24, my 50th birthday is 2/19. DH, myself and our 4 closest friends. I think the weather should be in the low 70’s that far south. Here’s a pic of the property, looks like a great place to hang out for a week 😁

  • going2beatthis
    going2beatthis Member Posts: 167
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    Perfect time of year to visit Florida.

  • kbl
    kbl Member Posts: 2,793
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    @illimae That looks phenomenal. You will love it.

  • illimae
    illimae Member Posts: 5,652
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    I booked it and because I’m such a planner and organized, I had a rating system by category (ent. area, access to beach, weather and location), DH had a good laugh at that. This was the highest scoring property, now I just have to wait for the next 8 months.

  • going2beatthis
    going2beatthis Member Posts: 167
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    Hope the new 8 months go fast!

  • kbl
    kbl Member Posts: 2,793
    edited June 27
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    @illimae The wait is torturous, and then once it comes, it goes by so fast. Lol. I’m so glad you booked it.

  • illimae
    illimae Member Posts: 5,652
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    This is Edgar! Please forgive the dirty glass door but I had to share. He’s taking really well to the dinner time routine. I put food out for him and caw to him, he usually lands and eats within 15 minutes. DH and I watch him enjoy his meal, while we are doing the same.

  • going2beatthis
    going2beatthis Member Posts: 167
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    Illimae, anything you recommend I should ask my radiation oncologist on Wednesday when he is doing the simulation?

  • illimae
    illimae Member Posts: 5,652
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    Fay, I would ask for something for anxiety, if the mask is going to be an issue for you. The procedure itself is pretty quick and easy and recovery is just a good day or two of rest.

  • going2beatthis
    going2beatthis Member Posts: 167
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    @illimae - thanks for the tip. Will add that to my list of things to cover with the rad onc tomorrow.

  • kbl
    kbl Member Posts: 2,793
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    @illimae I hope your lunch get-together went well.

  • going2beatthis
    going2beatthis Member Posts: 167
    edited July 15
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    Boy has July turned out to be a marathon between MO and RO visits, brain MRI on 7/3, Pet/CT scan on 7/5 and a blood biopsy to test for the ESR1 mutation.

    Results:

    No ESR1 mutation (at least for now). 👏 Now the question is, since I have been on an AI for almost 3 1/2 years, does this mean that there is a decreased ot an increased change of developing the mutation the longer I stay on it? Anyone know of any studies that have been done on this yet?

    The bone met in my skull has gotten a little bigger for the 3rd MRI in a row. Pet Scan shows no other activity except for this lesion too. Saw the RO last week and will start Stereotactic body radiation therapy (SBRT) on Monday for 5 sessions. I understand that it is what is used to treat oligometastatic disease. Just heard today that some say walking for 15-20 minutes right before and right after treatment helps wade off fatigue. Anyone else hear this or have any hints about minimizing side effects?

    Glad to be doing it and elimainating that one stubborn lesion. Hopfully, this will result in being NED again and my markers going down instead of up! 🙏

    Hope everyone is doing okay. Won't be at Zoom meetings until July 24th. Take care.

  • Rosebessie
    Rosebessie Member Posts: 78
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    @goingtobeatthis Dear Fay, sending my prayers and hugs. I love your wonderfully positive mindset 🤗💕🙏

  • mojos
    mojos Member Posts: 34
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    Fay,

    I'm hoping that the radiation is working and that you are not too fatigued. See you Monday!

    MJ

  • going2beatthis
    going2beatthis Member Posts: 167
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    Thx everyone for your well wishes and checking in on me this week.

    4 DOWN, ONLY 1 more to go (tomorrow).

    So far the only se has been a headache which has worsen each day. My RO said it is either "pain flare" or an inflammatory reaction to the lesion dying. … not dangerous - just an indicator of response." Am alternating between tylenol and advil every 3 hours.

    Follow-up MRI scheduled for mid October.