Anyone else HER2+ with Lung mets

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adc21791
adc21791 Member Posts: 8
edited September 2016 in Stage IV/Metastatic Breast Cancer ONLY

I am fairly new to this group. I am currently on TCH every 3 weeks. I have not read anything positive about Lung mets. I could use some positive input. I have stage IV HER2+ breast cancer with mets to the right lung and possible other areas. I will be having a PET SCAN 9/13/2016.

Kim

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  • dawny
    dawny Member Posts: 1,126
    edited August 2016

    Hi Kim, I was diagnosed stage IV from diagnoses over five years ago. I was er/pr neg and HER2 +. I had mets to the lung, and numerous nodes: in the centre of my chest, neck and a large mass in right breast. I started on Abraxane and Herceptin, and had a complete response, and was declared NED. Twelve months later, another lump in same breast, so had lumpectomy and started a clinical trial for TDM-1. More progression whilst on the trial, so left the trial and had a single mastectomy, which showed triple neg. My oncologist believes I had both triple neg and HER2+ at diagnosis. I then had rads on the large node in the centre of my sternum. so for over three years now, I have been NED. I am having scans on Friday (six monthly now!) hopefully NED will still be with me.

    Hopefully some others will chime in with their experiences also. xx


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  • adc21791
    adc21791 Member Posts: 8
    edited September 2016

    Thank you dawny. I just found out in May 2016. I am still in that fear stage and mind going crazy with me. I am glad to hear your story. It gives me hope.

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  • MarshaMay
    MarshaMay Member Posts: 95
    edited September 2016

    Dear Adc, the first few months are very difficult and I am so sorry you find yourself here. I was diagnosed de novo almost 5 years ago with lung mets,among others. My lung mets have stayed very stable over the past years while I was on Herceptin and Navelbene, and then Xeloda and Tykerb, then Herceptin and Perjeta (with Taxol to start), this kept me NED for about 3 years, now I'm on to Kadcyla. There's always hope and a new drug....

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited September 2016

    Triple +++ here, LUNG mets 8+ years!! alive and kicking. They have been small in numbers and size...and actually, grow/shrink a lot. I had a lot of luck with Tykerb/herceptin combo.

    My lung mets have NEVER given me a problem, now my bone mets..

    My original surgeon said that soft tissues mets were 'serious', well here is what I learned...No matter where your mets are if they respond to treatment, then all is good.


    Janis


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