Julitina's Journey:
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 4 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 5 Celebration Icon Celebration
- 6 Procedure or Surgery Icon Procedure or Surgery
- 7 Radiation Icon Radiation
- 8 Other Care Icon Other Care
- 9 Decision Point Icon Decision Point
- 10 Procedure or Surgery Icon Procedure or Surgery
Patient: Rare Cancers
Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 10 years ago, Female, Age: 65
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Julitina
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Experience with
Rare Cancers
about 8 years agoMisdiagnosed
Oh No
Got diagnosis rare neuroendocrine cancer met to liver unknown primary 1/11
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Julitina
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Experience with
Rare Cancers
about 8 years agoImplant chemotherapy port
Procedure or Surgery
This person has yet to add any details about this experience.
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Julitina
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Experience with
Rare Cancers
about 8 years agoChemotherapy
Drug or Chemo Therapy
Sickness worsened with each treatment until Oncologist decreased dosage
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Julitina
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Experience with
Rare Cancers
about 8 years agoMedicine for low white blood cell count
Drug or Chemo Therapy
Aching
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Julitina
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Experience with
Rare Cancers
about 8 years agoAfter multiple scans, including octreotide scan, visit to UCSF oncology specialist believe first 2 path reports from liver biopsy are wrong, possibility of slower growing cancer. They believe primary is in small intestines. Current chemo not working, stop
Celebration
This person has yet to add any details about this experience.
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Julitina
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Experience with
Rare Cancers
about 8 years agoSurgery
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.
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Julitina
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Experience with
Rare Cancers
about 8 years agoPrep 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.
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Julitina
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Experience with
Rare Cancers
about 8 years agoOctreotide 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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Julitina
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Experience with
Rare Cancers
about 8 years agoClinical 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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Julitina
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Experience with
Rare Cancers
about 8 years agoSurgery
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.