Within the past few months, I have had numerous VIP (Vasoactive Intestinal Polypeptide) blood tests which have all come back extremely positive. I understand that the culprit is a VIPoma, a tumor typically associated with the pancreas or somewhere in the GI/nervous system. I have had numerous tests to try to locate the tumor, including CT Scans, MRI and Endoscopes (with ultrasound) and Octreotide Scans. We are still unable to localize the tumor. As you can image, I am pretty frustrated. Does anyone know any specialists that has had experience with VIPomas that they can refer me to? My GI would be more than happy to consult with them incase we missed anything during these test. As these tumors tend to metasticize, we are deperately trying to locate it....
When I first became ill, I thought it was a bout with the flu. The dehydration was terrible, "rapid transit" of food (food passes through my entire system in less than 10 minutes), headaches, etc. I was put into the hospital for 1 week to rehydrate. They performed an upper GI and found fluid laying in the bottom of my stomach. My GI dr was the only smart one to test for VIPoma based on his previous experience. The VIP hormone is hypersecreted from a tumor, typically found on/in the pancreas, as well as the neuro system. I still suffer from the symptoms I noted above. This type of tumor is exceptionally rare and hard to localize.
I have VIPoma and have used Dr. Richard Warner at Mount Sinai in NY as a consultant. He is extremely knowledgeable about carcinoids (the nearest cancer family member) and has experience with VIPomas as well. I would highly recommend him. His phone number is 212-722-2100. Please feel free to email me directly (***@****) if I can be of any assistance to you. I know this is a difficult period for you... I went through a very rough time when I was first diagnosed, too. The good news is that I'm doing and feeling very well now, and my disease is stable (almost 9 months after my diagnosis)! I've learned a lot along the way and have met some amazing people. Best of luck to you. -Lindy Rex
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