SSCAL's Journey with Chordoma, Bone Cancer

Patient: Bone Cancer > Chordoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 10 years ago, Male, Age: 68, Stage Recurrent

  1. 1
    • SSCAL
    • Experience with Chordoma, Bone Cancer
    over 4 years ago
    SSCAL's Avatar

    Health insurance issue

    Oh No

    BCBS claimed my proton beam radiation was "investigational" so they would not pay! After weeks of futile phone calls to BCBS, my wife contacted the state insurance commissioner. Shortly after, BCBS agreed to cover my treatment!

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  2. 2
    • SSCAL
    • Experience with Chordoma, Bone Cancer
    over 4 years ago
    SSCAL's Avatar

    Surgery

    Procedure or Surgery

    Two months after surgery I underwent 43 treatments of proton beam radiation at Mass General in Boston. Three years later the chordoma returned. In hind sight, I wish I had both surgery and radiation at Mass General. They have a higher success rate when they do both.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • SSCAL
    • Experience with Chordoma, Bone Cancer
    over 4 years ago
    SSCAL's Avatar

    Currently two years into trial at Methodist Hospital in Omaha.

    Clinical Trial

    I'm currently two years into the study. The drug i'm taking, dasatinib, is used for patients with blood disorders. My tumor growth has stopped/slowed and the only side effect is some fluid buildup on my lungs.

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