We actually never had trouble getting help. His pnet was found incidentally and we’ve only seen NET specialists since that diagnosis. All have provided him with excellent care. A NET specialist is crucial to treating this disease. And even then we sometimes had to be persistent. For example, following his first surgery he frequently digestive and bowel issues (pain and diarrhea) Creon did not work but the specialist we saw for many years didn’t seem to have a solution. When we moved out of state and saw a new specialist, we talked about it and he suggested a bile test. Bingo! His system wasn’t getting rid of bile properly. He prescribed a med for it and that issue is now much better. Bottom line - if at all possible get your care from a net specialist. And if the one you see doesn’t help, seek a second opinion. Some even do video consults for 2nd opinions.

I'm on the path to getting the help. Lung biopsy and pancreatic biopsy. Will have more answers in January. I truly watch what I eat and when the symptoms start, I lay down and put a wet washcloth on my head to cool down, hoping I won't vomit. If I stay like that, if I'm home, the episode will pass. Honestly, I don't have answers to how to stop these episodes, but I think once I have answers there will be something that will help. Fingers crossed.