Tenshi25's Journey with Endocrine Tumor (NET)

Caregiver: Pancreatic Cancer > Endocrine Tumor (NET)

Patient Info: Receiving hospice or palliative care, Diagnosed: over 9 years ago, Female, Age: 70, Stage IV

  1. 1
    • Tenshi25
    • Experience with Endocrine Tumor (NET)
    almost 4 years ago
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    Misdiagnosed

    Oh No

    First said it was the quick growing Pancreatic Cancer, and gave us only 6 months..we went for a second opinion.

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  2. 2
    • Tenshi25
    • Experience with Endocrine Tumor (NET)
    almost 4 years ago
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    Surgery

    Procedure or Surgery

    Had 3/4 of the pancreas, spleen, and some lymph nodes removed. Ended up getting pancreatitis and hospitalized for weeks after.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  3. 3
    • Tenshi25
    • Experience with Endocrine Tumor (NET)
    almost 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Experimented with different ones until we found Affnitor worked the best.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • Tenshi25
    • Experience with Endocrine Tumor (NET)
    almost 4 years ago
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    Cancer is shrinking

    Celebration

    The Afinitor stabilized the tumors.

    1 Comment
  5. 5
    • Tenshi25
    • Experience with Endocrine Tumor (NET)
    almost 4 years ago
    Tenshi25's Avatar

    Health insurance issue

    Oh No

    Now, the insurance would not cover Afinitor once insurance changed due to being on Medicare. Skipped 3 months of chemo because it was unaffordable.

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  6. 6
    • Tenshi25
    • Experience with Endocrine Tumor (NET)
    almost 4 years ago
    Tenshi25's Avatar

    Lost loved one

    Loss

    My mom recently passed away. She fought long and hard and I only wish she had more time to enjoy her life at 66 years young. I miss you mom!

    3 Comments