shhwee's Journey with Medulloblastoma

Patient: Brain and Spinal Cord Tumors in Adults > Medulloblastoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Female, Age: 23

  1. 1
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    My initial brain biopsy. Supposed to be a six hour surgery, wound up under the knife for twelve. 38 Staples, a week in the ICU. Then I had to relearn how to move my body.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  2. 2
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Decision Point

    Told I was terminal three weeks after my 18th birthday. Had to decide what treatment, if any, that I would try.

    0 Comments
  3. 3
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Proton Therapy

    Radiation

    Went to Houston, Texas to receive Proton Therapy for a month.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Carboplatin was a bit**.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  5. 5
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    CSF Leak

    Oh No

    My initial biopsy incision begins leaking CSF [Cerebral Spinal Fluid]. The back of my head balloons out, and extreme nausea kicks in.

    0 Comments
  6. 6
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Shunt placement surgery. After placement I regained facial movement, and hearing.

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Cancer is shrinking

    Celebration

    My tumor has shrunk by 75% after just a month of Proton Therapy, and Vincristine. I am no longer terminal.

    0 Comments
  8. 8
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Received 3 months of Maintenance chemotherapy.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  9. 9
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Remission

    Celebration

    The tumor is nowhere to be seen on my MRI scans, and no traces of tumor were found along my spinal cord. I am officially in remission.

    2 Comments
  10. 10
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
    shhwee's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Finished last 3 months of a 6 month cycle.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  11. 11
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Finished treatment

    Celebration

    I have finished the last dose of chemo I will ever have.

    6 Comments
  12. 12
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Remission

    Celebration

    Completely clean MRI! With improvement to the abnormalities Proton Therapy left!!!

    0 Comments
  13. 13
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Hair is back

    Celebration

    OFFICIALLY FUZZY!!!

    1 Comment
  14. 14
    • shhwee
    • Experience with Medulloblastoma
    almost 5 years ago
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    Lost loved one

    Loss

    My little warrior buddy Nicholas Ybarra passed away this weekend. You'll be forever in my heart.

    2 Comments
  15. 15
    • shhwee
    • Experience with Medulloblastoma
    over 4 years ago
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    Side Effects

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

    0 Comments
  16. 16
    • shhwee
    • Experience with Medulloblastoma
    over 4 years ago
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    School and Job

    Celebration

    I have a new job working for Merle Norman, and I'm a full-time student!

    4 Comments
  17. 17
    • shhwee
    • Experience with Medulloblastoma
    almost 4 years ago
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    Menopause

    Side Effects

    Unfortunately my menstrual cycle was stopped for so long that my body started the process of menopause. I am 20 years old. So... don't forget to have yourself checked shortly after ending treatment ladies!! hahaha

    0 Comments
  18. 18
    • shhwee
    • Experience with Medulloblastoma
    about 3 years ago
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    Celebration

    On January 3rd I will be in remission for two years!! I also got engaged about a month ago :]

    1 Comment