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Thread: Surviving brain cancer for 20 years. All treatments listed- Taking all questions

  1. #1
    Newbie New User
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    Oct 2019
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    Surviving brain cancer for 20 years. All treatments listed- Taking all questions

    Drugs and chemotherapy:
    -Temodar
    -Tamoxifen
    -Procarbazine
    -Lomustine
    -Vincristine
    -Carmustine
    -Avastin
    -Keytruda
    1999 - Craniotomy #1
    2003 - Craniotomy #2
    2004- 30 rounds of brain radiation
    2008 - Craniotomy #3
    2014 - Brain biopsy #1
    2015 - Brain biopsy #2
    2016 - Craniotomy #4
    2017 - 30 rounds of brain radiation
    2018 - Craniotomy #5
    2019 - Shunt surgery & 5 rounds of condensed radiation

    1999-2019 in total:
    7,300: Lived that many days with brain cancer.
    65: Rounds of radiation
    8: Brain surgeries
    100: MRI/Scans
    0: clean scans
    2: children
    1: One day at a time

    Hospitals visited:

    - Norton Cancer Institute
    - Brown Cancer Center
    - Emory
    - Duke
    MD Anderson
    - Mass Gen
    - Sloan Kettering
    - UCSF
    - City of Hope
    Moffit Cancer Center
    City of Hope
    Stuttgart Germany
    USF


    Thanks!
    Tyler
    Last edited by lisa1962; 10-18-2019 at 05:23 PM. Reason: removed personal email for post

  2. #2
    It sounds both trying and amazing. Can I ask what grade and type of tumor you have?

  3. #3
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    Quote Originally Posted by mccindy View Post
    It sounds both trying and amazing. Can I ask what grade and type of tumor you have?

    Anaplastic oligodendroglioma III with co-deletion of 1P & 19Q chromosomes. I've been treated as if it's a GBM the last five years, but I've run out of options besides a clinical trial which I refuse to do if the tumor starts growing again. It's grown on every chemo so those options are out. No more radiation.Tumor location prevents a sixth craniotomy.

  4. #4
    Iím so sorry to hear of the position you find yourself in currently. It does sound as if youíve found the last 20 years to be more than what you expected at the start. Iím sure itís been a very trying road.

  5. #5
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    Quote Originally Posted by mccindy View Post
    Iím so sorry to hear of the position you find yourself in currently. It does sound as if youíve found the last 20 years to be more than what you expected at the start. Iím sure itís been a very trying road.
    I've been very lucky with so much support around me!

    https://www.wave3.com/2019/09/19/can...ke-difference/

    https://www.whas11.com/video/feature...a-c2452febf3d8

  6. #6
    Senior User
    Join Date
    Jun 2017
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    138
    I am not a brain cancer patient and usually do not read this forum as I am a lung cancer patient of almost 3 years. Thank you for posting all you have endured to survive, it has really given me the strength to continue being strong and appreciative.
    Also, whether our journey is in years or months, I think it is alot more then what we expected at the start.
    My best to you.
    Linda

  7. #7
    Super Moderator Top User
    Join Date
    May 2011
    Posts
    873
    Thanks for laying out your journey - inspirational. What advice would you give the newly diagnosed?
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

 

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