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I always had a queasy stomach, so the vague aches and occasional diarrhea didn't worry me much until they got very frequent. In March '96 I finally had upper and lower G-I's and an ultrasound, which were negative. My family physician put me on antacids and they seemed to help somewhat. A very important and time consuming volunteer project put off any further investigation until August, when the pain and diarrhea became much worse, coupled with some weight loss. An endoscopy showed nothing in my stomach and I finally went to a gastroenterologist who immediately ordered a ct scan, which showed a 'swollen' body and tail of pancreas. Ct scan guided biopsy confirmed adenocarcinoma on Aug. 19 '96. An exploratory with option for removal of pancreas and adjoining organs was done in Oct. with diagnosis of nonresectable tumor on the mesenteric artery and in the omentum. The surgeon, without my knowledge, told my kids 'about six months'. I had maximal radiation coupled with an infusion of 5FU thru Nov. and Dec. The onc. wanted 'bookend' infusion, but I insisted on continuous. The treatment caused extreme fatigue, nausea, vomiting and mouth sores. In the middle of it, I asked one of the radiologist oncs whether I had weeks, months or years. She said months. I lost 22 lbs altogether and was on propoxyphene every four hours. When the treatment ended I found out that the pain killer was no longer needed.I started feeling well very quickly. A ct scan in Jan '97 showed an 'almost normal' pancreas with the Ca 19-9 down to 11 after reaching 300+ at diagnosis. At that time I started on the macrobiotic diet, after reading an article published by some Tulane Univ. researchers, who found that macrobiotics prolonged life in PC patients. Went back to feeling fine, except for extreme thinness.In Sept. '97 the Ca 19-9 started to increase again, but the ct scans remained unchanged and there was no pain. I developed a very strange sensation in my feet (as if they were tightly bound). This was termed neuropathy caused by cancer and I was told nothing could be done about it. I still have this feeling, except that now it seems like boards tied to my feet. By Jan. '98 my Ca 19-9 was very high. I read about an octreotide/tamoxifen treatment tried in Montreal and persuaded my onc to start it. Unfortunately, after 2 months on it, the Ca 19-9 continued to climb. By April '98 the tumor reappeared on the MRI. I went off the oct/tam treatment and off the macrobiotic diet. Almost immediately I put on most of my pre-cancer weight . Started on Gemzar and continued for three months, but every two weeks, because of extremely low blood cell counts. It helped for a very short time by lowering the Ca 19-9, but the tumor marker shot up again, eventually to 10,150. Epogen helped enormously in bringing my hemoglobin up. Started inquiring about 9 nitrocamptothecin and began the trial on Sept. 16 '98. Still on it, with the Ca 19-9 dropping, as of Oct. 21. 1998. I feel pretty good except for nausea. I'm thankful I have had this time (26 months past diagnosis) and hope to continue living as fully as possible for a bit longer.

I'm 64 years old, married, have 3 children and 4 grandchildren. I was a medical technologist for many years and eventually coordinated a medical laboratory technology program and taught college biology for another twenty years. Never smoked, drank white wine occasionally, adhered to a vegetarian diet for the last eight years and ran three miles/day.

Posted 10/27/1998 02:19 pm by Evaj
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