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DiscussionNeuroendocrine Tumor - no treatment plan method
Neuroendocrine Tumors (NETs) | Last Active: May 5 8:09am | Replies (164)Comment receiving replies
Replies to "@tomrennie how are you now?"
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@ceefer I am doing great thanks. But, it was a struggle to get here. I experienced vomiting, diarrhea, stomach pain, gas, bloating, fatigue, and just plain feeling like crap for a long time. I first started feeling like this during covid. Going through the diagnosis process takes time. My body, since I was getting sicker, didn't always cooperate. Combined with covid, the process was delayed. When I was finally diagnosed in 8/22, I lost over 100 pounds. My 8cm pancreatic net in the body and tail was blocking some important plumbing. The cancer spread to my liver which had innumerable lesions with a few over 8cm. My pancreas and liver weren't functioning properly. My body was wasting away, cachexia. I looked like I was pregnant from the accumulation of fluid in my stomach, ascites. The cancer also spread to my bones. I started chemo on 9/1/22. I now live on chemo with a 4cm tumor on my pancreas, liver lesions with the biggest also around 4cm, and lesions on my bones. I am fortunate to be alive. Please seek the advice of a NET specialist sooner rather than later. The expertise of my specialist saved my life. I have listened to other patients with NETs on here being treated by non NET specialists. Some have gone through extensive surgeries, or endured chemo regimens that historically don't work on NETs, only to end up on the same chemo as me with a lot less body parts. The chemo that I am currently on, capecitabine, doesn't work for everyone. Each person's body is different. How we all manage our NETs, the doctors and treatments we choose, is our decision. It is our body. I just want to share my experience with you, so you can hopefully avoid my journey. Do you have any other questions?