HER-2+ with Brain Mets

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lindsay_a07
lindsay_a07 Member Posts: 10
edited September 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hello Ladies,

I was originally diagnosed with Stage IV (HER-2+++) in November 2016. Multiple lesions to the liver at that time. I had 7 rounds of chemo and have been on Herceptin/Perjeta every 3 weeks since then and thankfully NED! However, my routine PET scan at the end of July showed some activity on my brain which led to us finding a 2x4cm tumor on my left cerebellum. I had a Craniotomy to successfully remove the tumor on August 9.

I am preparing for 3-5 SRS radiation treatments to the resection bed. Does anyone have experience with this? What was is like for you? Any noticeable side effects and was it successful?

Also, did brain Mets change your treatment course from H/P to something else?

Thanks in advance for any responses! :)

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  • illimae
    illimae Member Posts: 5,710
    edited September 2018

    I recommend asking in the Brain Mets Sisters group, many of us there sharing stories and treatment options. I had Gamma Knife to mine, so the procedure was different but brain and body are typically treated independently due to the BBB. I remained stable in the body, so I continue with my H&P and zap the brain lesions as they come.

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  • pajim
    pajim Member Posts: 2,785
    edited September 2018

    I have a friend doing exactly as Illimae. H&P, sometimes carboplatin when there's a bodily recurrence (mostly not). Cyber knife the brain lesions when they need it.

    Her first brain met was more than 2 years ago and she's fine.

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  • mara51506
    mara51506 Member Posts: 5,088
    edited September 2018

    I am on HP treatment too. When diagnosed, they stopped my infusions during my fist whole brain radiation. That took a long time to recover from. When I had my recurrence this year, I had local radiation. No negative side effects from that. Now getting MRI every 3 months. You would still get HP with brain met. They do not cross the BBB. Brain mets don't mean the drugs are not working from the neck down. The only pause in drugs is during radiation. Join us on the Brain Mets Sisters. There are quite a few of us there.

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  • lindsay_a07
    lindsay_a07 Member Posts: 10
    edited September 2018

    Thank you all for the responses! I really appreciate it. I have been on the Brain Mets Sisters board, but was just looking for those with HER2+ receptors who have had a similar experience. I know my oncologist mentioned switching to Xeloda, but we decided to stay with the HP since it has been so effective below the neck.

    Thanks! : )

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  • hhfp
    hhfp Member Posts: 51
    edited September 2018

    My wife currently undergoing treatment to clear the brain mets... several treatments and none worked so far. Latest treatment is using Intrathecal Herceptin plus Eribulin but so far not good. Will find out for sure on the next MRI end of the month... For the cancer in the main body, what worked was THP (Docetaxel, Trastuzumab and Pertuzumab). I have another thread asking about latest clinical trials to see if there are clinical trials or approved therapy to allow administration of THP intrathecally...

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