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My mom, Bessie, is 52 years old. She has vipoma, a rare islet cell carcinoma of the pancreas. She found out after two years of relentless diahhrea and the reassurances of my childhood doctor that she had irritable bowel syndrome and colitis. In April of 2000, her legs became weak and numb. Within 24 hours, she could not stand or even sit up in bed. We took her to the emergency room and she was diagnosed with hypokalemia or low potassium. The doctors said it was from diahhrea, gave her potassium and sent her home. Less than a month later, she was back, again with the hypokalemia. Same thing as before. In July of 2000, she became so sick she could not eat. Within 4 days she lost 20 pounds. My dad took her to the emergency room, where a CT scan revealed excessive metastases of some form on her liver. Needless to say, this became our nightmare. Her gallbladder was about five times its normal size, but the surgeon did not want to open her up till he knew where the primary site of the cancer was, because he wanted to be able to do all he could in one trip and get her started on chemo, if necessary. The next day I held her head in my arms as she got her liver biopsy. Then she begged the surgeon to take her gallbladder because she knew she would die if he didn't. During the surgery, the surgeon removed her ovaries, her gallbladder, and a couple of larger mets on her liver. He told us she had islet cell cancer, a form of pancreatic cancer that was rare, and slow-growing, but ultimately fatal if the tumor was not localized and could not be successfully removed. What complicated matters was that, as rare as islet cell cancer is, Mom's is the rarest. 1 in 10 million people get it, and less than 300 cases in recorded medical history, or so we have read. Further, he told us that if we could not control the excessive diahhrea (20-40 bowel movements a day), Mom would die of a heart attack or a stroke brought on by the low potassium. Whether because of the metastasis or the diahhrea, her calcium was also sky high. The last seven months have taken us to Mayo, where Mom was advised to go home and enjoy her life. The doctors there told her chemo was not effective on her cancer, nor was radiation, but that as things progressed, both might give her some palliative relief. She has been put on sandostatin, or octreotide, which inhibits the hormone VIP that is being secreted by her tumors. We all have VIP in our bodies--it's the hormone that tells our bowel to dump. In Mom's case, her tumor tells her bowel to continuously dump. Without the sandostatin, we could not control the diahhrea. Sometimes I am discouraged by the lack of understanding of islet cell cancer. Though it often has a much better prognosis than adenocarcinoma, we have been told Mom will die. There is nothing we can do except pray that someone comes up with a cure, which is complicated by the fact that not much money goes into researching islet cell cancers because they are so rare. My mom is a wonderful mom. My friends used to tell me she was like Roseanne Conner, but with a sweeter edge. She is my guardian angel. All my life, I have depended on her to make sense of my life. Please, if you have islet cell cancer, or someone you love does, contact me. I have wealth of information I have collected, and it never hurts to have someone to talk to. As for family, I have a sweet, sensitive father, who is also an alcoholic, so this is very challenging for us all, and two sisters, both of whom live in the same town as my parents. I live 8 hours away, by car. We are a close, wonderfully frustrating dysfunctional family, and like most, we do our best every day.

Posted 01/08/2001 07:28 pm by Amy Adams
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