KiVier2011's Journey with Meningioma

Caregiver: Brain and Spinal Cord Tumors in Adults > Meningioma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 5 years ago, Male, Age: 21

  1. 1
    over 4 years ago
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    Diagnosed

    Oh No

    The tumor was discovered when undergoing treatment for a sports injury! Went from healthy athlete to fighting for life in less than a week!

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  2. 2
    over 4 years ago
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    Surgery

    Procedure or Surgery

    Had to have c-spine removed (c-1-c-5) and replaced with hardware. The surgery went great, but all life-plans have been stopped because of it.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    over 4 years ago
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    External radiation

    Radiation

    He was very sick, and lost a lot of weight. We had to pick up and move 100 miles away for the treatment, so huge impact on 2 little brothers and lifestyle. He slept 20-22 hours every day and could barely eat, but luckily was brave enough to endure it and never complained. Such amazing poise for one so young.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    over 4 years ago
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    Home care

    Other Care

    Had to undergo physical therapy to return his neck to some flexibility. On some days it was amazing to see how quickly he recovered!

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  5. 5
    almost 2 years ago
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    Surgery

    Procedure or Surgery

    Total resection was impossible. Treated with a very high-dose radiation during operation. CSF leak forced bed rest for more than a month, and tumor had partly regrown during that time.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    10 months ago
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    Surgery

    Procedure or Surgery

    May 5, 2015

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    10 months ago
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    Surgery

    Procedure or Surgery

    June 2015 pseudomeningiocele repair from May surgery

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  8. 8
    10 months ago
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    Surgery

    Procedure or Surgery

    August 2015 Shunt put in to correct hydrocephalus caused by May surgery

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    10 months ago
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    Surgery

    Procedure or Surgery

    Another pseudomeningiocele repair

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    10 months ago
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    Surgery

    Procedure or Surgery

    Muscle graft to make final repair of pseudomeningiocele. Found infection in CSF, catheter inserted to be able to treat with antibiotics.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  11. 11
    10 months ago
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    Chemotherapy

    Drug or Chemo Therapy

    Sunitnib as experimental treatment, did not work and severe impact on health. December 2015-February 2016

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  12. 12
    10 months ago
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    Chemotherapy

    Drug or Chemo Therapy

    Avastin, hoping it will buy him some time. July 2016-?

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  13. 13
    10 months ago
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    Cancer is back/Recurred

    Oh No

    The tumor has quadrupled in size since April 2016, and since it is at the top of his spine, it is compressing his spinal cord and causing issues with his arms and legs. Surgery and radiation are not available, and so we are trying to buy time by starting Avastin, an experimental treatment at best. :-(

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  14. 14
    over 4 years ago
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    Fatigue (tiredness)

    Side Effects

    So tired all the time. Pushed to complete junior year of high school, and continued studying and completed his work. Sometimes too tired to eat. :(

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