Hanging tough!

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  • February 2, 2017 at 5:39 am #92057
    spokanemom
    Spectator

    Kathy,
    Thank you. We did get the insurance to approve testing by Foundation One, and they received a sample, but it was “conditional”, so they requested another sample and hopefully that will be “sufficient”. If not, the doc has to decide whether to proceed with the test using just the “conditional” sample size. I guess it did not have quite enough tumor material in the sample they received.

    I really hope they get a better sample from the pathology lab!
    Victoria

    February 2, 2017 at 1:33 am #92056
    knfarrow
    Spectator

    Hi SpokaneMom –

    My oncologist had them do the Foundation One genetic profile on my tumor after my surgical resection. So glad she did!

    Kathy

    December 29, 2016 at 7:59 am #92055
    spokanemom
    Spectator

    Kathy – How did you find out your tumor’s genetic profile? Thank you!

    April 7, 2016 at 11:48 pm #92051
    middlesister1
    Moderator

    Kathy,

    I am SO happy for you and your family. I can’t wait until good news like this is the norm for CC patients. I also hope to see the insurance fights lessen, but thank you for fighting it. It not only affects your life and family, but hopefully will help to help those coming after you trying to get approval.

    Best wishes doesn’t come close to expressing the continued health and happiness I wish for you and family-

    Catherine

    April 7, 2016 at 6:03 am #92054
    lainy
    Spectator

    Kathy, YIPPEE, doing cartwheels! Great news and keep on hanging tough. Many times it is the ONLY way to hang! And I just bet those 2 little kids are the best RX ever! Wishing for the very best for you! Please do keep us up to date on your progress!

    April 7, 2016 at 4:59 am #92053
    iowagirl
    Member

    Oh Kathy, I am right on the heals of Marion with the tears of joy for you and your family. Enjoy every minute you are given and hug those kids for all your worth. You deserve the good times to come your way.

    Julie T.

    April 7, 2016 at 2:47 am #92052
    marions
    Moderator

    Kathy…..news like this brings tears of joy to my eyes. I am so absolutely, totally thrilled for you and your family and especially the beautiful children of yours. As far as I know, Pazopanib (Votrient) is approved for advanced soft tissue sarcoma and advanced renal cell carcinoma.
    This drug then was prescribed off-label, hence your comments re: insurance benefits.
    How ultimately was that resolved?
    Again, so happy for you.
    Hugs,
    Marion

    April 6, 2016 at 11:21 pm #12348
    knfarrow
    Spectator

    I can’t remember when I lasted posted. I was diagnosed with intrahepatic CC in January 2015. I had a surgical resection with clean margins in March 2015 of a HUGE tumor. However, I was found to have lung mets in September 2015. I went into a clinical trial and failed that drug in December.

    So, on December 31, I started pazopanib based on my tumor’s genetic profile. The insurance fight was brutal, and the side effects are no fun (nausea, myalgias). However, at the end of February, there were no new mets and most of the existing ones were becoming necrotic!

    I am working full-time and enjoying time with my kids (now 7 and 5). Fifteen months after this devastating diagnosis, I’m hanging tough!

    Kathy

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