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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)Comment receiving replies
Hi, thanks for your reply to my post. So sorry to hear that your husband's
pain is so severe. Perhaps the doctors can come up with a more effective treatment plan for pain control. It sounds as if he went to hospital for the back problem and they discovered NETs. This seems to be a common occurrence. When you speak with the doctor tomorrow, there are some things you can ask about. Find out if they know the primary site for the NETs, the liver or the pancreas. Did he have a Gallium 68 pet scan which is the best to find where NETs are and how many? Is your doctor someone who specializes in NETs? Are they planning other treatments besides the Sandostatin? Best of luck. Hope you get the information you need to go forward.
Lenora
Replies to "Hi, thanks for your reply to my post. So sorry to hear that your husband's pain..."
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Lenora,
Thank you so much! My husband is actually PNET I guess? It started in his pancreas, and they found lesions over 20 on his liver and the lymph nodes in his stomach. I am going to ask about lesion vs. tumor. He started the Sandostatin and had 5 monthly treatment's and we go for a "copper" PET scan. We are going to Moffitt cancer center in Tampa and the Dr. we have specializes in this cancer. With all of these lesions, he is still level one? I think they want to see how the Sandostatin has worked, then go from there? He is not a candidate for surgery and the spot on the pancreas is in the tail. Before his diagnosis I looked at bloodwork that had been done 4 month's apart and recent to the diagnosis and all AST, ALT, Bilirubin etc was in range and perfect? I said what the heck? According to his bloodwork everything hepatically makes it look NED no evidence of disease?? But when the diagnosis came in they explained it was rare, slow growing etc. I have alot of questions and thank you all, I really got alot of info. from your site! I will keep you posted! And I am bringing him to a back specialist who has a brace to maybe help the bulged discs.Thank you again. Praying for everyone!
Joni