Whipple and life after

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Whipple and life after

by DJChrisman on Mon Apr 16, 2018 02:41 PM

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Diagnosed in 2013 almost 5 yrs ago, misdiagnosed many years prior. Found in endoscopy thinking gall bladder. Had whipple took most of intestines duodenal, part of stomach, head of pancreas, part of liver, lymph nodes and (gall bladder which was fine) but in the way. Carcinoid metastasized couldn't get all from liver. Did have complications portal vein collapse and blockages but got well for a couple years. Then flushing weak horrible pain in liver area with liver swelling. Had sandostatin injections never felt better, felt worse ! Stopped and had octreoscans which do not work for me which we learn at first diagnosis prior to whipple. Again don't work...took pet scans and ct, mri showing tumors liver and wherever they decide to show ! 5hiaa never been elevated still to this day, original labs would never have pointed to cancer. Dr wanted to try sandostatin again I did and almost died 3 weeks later with severe cholangitis..dr said rare to happen but thats been my whole illness ! No more treatments. Now my serotonin has spiked high in a special test he does and I still feel awful 4 days a week. My strong mind has been keeping me going and im still working part time but having these terrible offness, trembles and feeling extreme weakness like about to collapse and i did once, along with pain spans in upper liver area and diarrhea off and on. Now having pain and spasms in legs and feet, hands. I don't have all these the same days different things different days ! Dr wants to send me to Pittsburgh for possible radio frequency ablation. I think he's just not knowing so much about carcinoid as I hoped and being shipped out by another Dr again. I don't want to be away from family again. Chromahranin a is ok, 5ihaa is again still good, serotonin went really high. Wait watch and see as this cancer is so wierd it changes I just wish I could feel better more than not. He says my case is very complex and says I also have whipple disease and they would have done things different as no whipple when they saw it met. to liver. Oh my anybody have any suggestions, I'm 58 and lost 100 lbs from this mess and very active and strong willed but frustrated feeling like crud. Sorry so long but 5 yrs of turmoil !

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