Her2+ Brain Metastases

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AMHarrison8
AMHarrison8 Member Posts: 7
edited March 2016 in Stage IV/Metastatic Breast Cancer ONLY

I was initially dx 1/2014 out of the gate with stage iv her2+ BC. Doing well with herceptun/perjeta until 3/2016 when dx with brain mets. Scared and considering options. Dont know what to do and looking for thrivers who have had wbrt?

Headed in today for new CT/PET scan.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited March 2016

    I am so sorry to hear of your diagnosis. Perhaps you might consider posting on this thread which is solely for members with brain mets. The group is wonderfully knoweldegeable and supportive! . https://community.breastcancer.org/forum/8/topics/...

    Wishing you an excellent outcome from your treatment!

    Edited by Mods to make link hot.

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited March 2016

    I'm so sorry to hear of your diagnosis AMHarrison. I too am HER2+ and I have been told it has a special affinity for the brain. I have no experience to share, but I hope you can find what you are looking for on the Brain Mets thread that Bestbird suggested. I wish you all the best with your treatment.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    Yes, come join us in the brain mets thread. We're the coolest group you never wanted to be a part of!

    On another note, brain mets treatment has come a long ways and her2 brain mets has particularly promising options. You may not need to do WBR even - we can give you some feedback on your situation

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  • lkc
    lkc Member Posts: 1,203
    edited March 2016

    there is also another forum her2 positive group forum. Ladies with brain mets doing well.

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  • AMHarrison8
    AMHarrison8 Member Posts: 7
    edited March 2016

    How do I join?? Moderator moved me to the brain mets thread, I thought?

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  • AMHarrison8
    AMHarrison8 Member Posts: 7
    edited March 2016

    Thank you!! (Sigh of relief) I'm having trouble navigating but thin I posted in the correct area. In any event, I'm looking at a clinical trial for Abermaciclib which from what I'm reading has been pushed/already approved by the FDA and is similar to Iberance which my onc nurse is looking into. Nor sure if I qualify for Iberance?

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited March 2016

    This is something always on my mind...in my brain!!! I haven't had a brain scan since mets dx in 2012. My onc says no reason to go trolling in there. What led to your find brain mets, AM????

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2016

    Ronniekay, Even though I am ILC, one of the first things my Onc did was a brain scan. Weird how they all do it differently....AM, lots of women doing well with brain mets for sure. I hope the Brain Mets thread info gives you some comfort.

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  • AMHarrison8
    AMHarrison8 Member Posts: 7
    edited March 2016

    I thought I had a sinus infection and was getting really short/sporatic headaches. Called my husband from work one day (3/2) to take me to the ER. MRI showed brain mets. PET/CT scan from Friday showed clear (neck down) according to my husband. I start the clinical trial at 8 am tomorrow (Tues) & am at peace with my decision not to do wbrt at this time. Cobtinued prayers requested and hoping for a positive outcome quickly!

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