gbm0106's Journey with High-Grade Astrocytoma (also called G...

Patient: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > High-Grade Astrocytoma (also called Glioblastoma)

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 11 years ago, Male, Age: 64

  1. 1
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
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    Diagnosed

    Oh No

    Other than the death of a loved one, I can't imagine hearing anything worse than 'you've got a brain tumor that appears to be of the most lethal variety. Yep, it was grade IV GBM. You're disabled now, good luck."

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  2. 2
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Once the air hits your brain, you're never the same. I survived without any loss of function, just some pain and lethargy that I've learned to live with.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
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    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
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    External radiation

    Radiation

    Focused beam burning of brain cells is amazingly painless. I walked out every day the same as i'd walked in. The side effects came on slowly and as I read more about it. The effect is it feels like your brain ages and by the time your six months are over, your brain is about 30 years older. I was 52 when it all started and not in very good shape. It may have been a wake up call and am in much better shape now, but I'm pretty sure the radiation more than the cancer or chemo or surgery, makes my brain feel like I'm 80.

    Painless Experience: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
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    IL 13 chemo infusion. failed

    Clinical Trial

    A 2nd surgery to insert 4 catheters into the cavity site, hooked to a small pump and bags of temodar flooding my brain for 96 hours straight, which I tolerated well enough to walk the hospital hallways for most of the last two days. It failed for "not significantly exceeding results of its predecessor, the chemo wafer.

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  6. 6
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    As predicted, there is behavioral modification and cognitive impairment. The chemo apparently did enough damage to permanently numb my feet, mostly my toes.

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  7. 7
    • gbm0106
    • Experience with High-Grade Astrocytoma...
    almost 5 years ago
    gbm0106's Avatar

    Other Care

    This person has yet to add any details about this experience.

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