Julitina's Journey:

Patient: Rare Cancers

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 7 years ago, Female, Age: 61

  1. 1
    almost 5 years ago
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    Misdiagnosed

    Oh No

    Got diagnosis rare neuroendocrine cancer met to liver unknown primary 1/11

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  2. 2
    almost 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Sickness worsened with each treatment until Oncologist decreased dosage

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    almost 5 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Aching

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    almost 5 years ago
  6. 6
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Extreme upper left abdominal pain decreases. Pain in lower abdomen, diarrhea 7 or more times a day. Path report shows intermediate growing( not aggressive!!), growing neurendocrine cancer, commonly called carcinoid. Primary was in small intestine, possible synchronous or mat tumor in appendix , lymph nodes 7/ out of 18 positive. Part of right colon, gall bladder, small intestine,lymph nodes removed. Liver biopsies. Tests show high chrogrannin levels reveal liver tumors producing high levels of serotonin, toxic, could be causing diarrhea.

    Went as Expected: Not Specified
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  7. 7
    almost 5 years ago
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    Prep for directed liver thermosphere therapy, shows left liver not able to be treated with radiation thermosphere a. Left lobe is largest tumor.

    Radiation

    Got very ill from prep for treatment, then discovered not best treatment location of left lobe tumors. So decided to try octreotide injections monthly.

    Painless Experience: Disagree
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  8. 8
    almost 5 years ago
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    Octreotide monthly injection with monthly blood, urine tests to track chrA, and 5h1AA by products of excess serotonin production from liver tumors.

    Other Care

    Blood, urine, scans show increasing level, even on highest doses of octreotide. Scans show increase in size of liver tumors.

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  9. 9
    almost 5 years ago
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    Clinical trials with new drugs,or continue octreotide

    Decision Point

    Finally, 8/12 carcinoid specialist oncologist says she want me to see oncology surgeon, who had said liver was inoperable. Urge on says he is willing to operate on liver to debulking tumors, expects better prognosis!!

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  10. 10
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Surgery 9/7/12, surgeon thought "better than expected" got 95% of all visible tumor on right liver lobe, left lobe removed completely. Recovery was very difficult. Lung problems, in hospital9 days. Home very weak, long time to regain strength.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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