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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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Misdiagnosed
Oh No
Got diagnosis rare neuroendocrine cancer met to liver unknown primary 1/11
Implant chemotherapy port
Procedure or Surgery
This person has yet to add any details about this experience.
Chemotherapy
Drug or Chemo Therapy
Sickness worsened with each treatment until Oncologist decreased dosage
Medicine for low white blood cell count
Drug or Chemo Therapy
Aching
After 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.
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.
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.
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.
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!!
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.