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Latest Advances In Treatment

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Subject: Latest advances in treatment
Date: 08/20/2007
In 1998 I had Whipple surgery to remove an adenocarcinoma from the ampulla de Vater, preceded by a biopsy, stent in the ampulla, extration of gall bladder (full of cholesterol stones and colonoscopy to remove viliform polyp. No chemo- or radiotherapy. My doctors said they wouldn't work. A pancreatic fistula then developed followed by 2 emergency operations and 3 months later bile by-pass surgery to resolve constant bile refluxes. In 2003 severe dble pneumonia caused by bronchoaspiration of bile, pulmonary collapse, renal failure and sepse grave. Somehow they pulled me thru. Since then, I've had constant successive bile refluxes with pneumonia. Antibiotic treatment has temporary effect only. Other symptoms: neuropathy in legs apparently caused by thiamin deficiency (no duodenum to process Vit. B1). Thiamin supplement treatment during 9 months. Still taking regular lower dosage Thamine. Also Avandia 4 mg to boost pancreas which is a bit weak, and low potency medicine for mild hypothyroidism (Synthroid 25 mg). Sucrafilm and proton pump inhibitor (Pariet 20 mg). Further different bile by-pass surgery was refused by my health plan last year. Just now my doctor is experimenting with longer term antibiotic treatment (Zinnat 500 2 x day). The bile refluxes have stopped, at least until now. I am now leading an almost normal life. Very recently symptoms of probable Vasculitis in right lower leg appeared. Still awaiting blood test results. Any ideas would be gratefully received. My doctor says my immune system is somewhat weak for surgery.
Subject: RE: Latest advances in treatment
Date: 08/20/2007

Sounds like you've pulled through so much.  My dad was just diagnosed within the past year.  I have found that the website www.cholangiocarcinoma.org is the most active and useful for this type of cancer.  Lots of patients and caregivers with various experiences and treatments.  Best of luck.

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