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Treatments for Carcinoids

Neuroendocrine Tumors (NETs) | Last Active: Jun 12, 2023 | Replies (52)

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@carcinoid23462

I was diagnosed in 2003 with an unknown primary (still not found) and tumors in my liver. An interventional radiologist selected by my awesome doctor, Arthur Vinik, an endocrinologist, removed the tumors that were already in my liver. At the time I weighed about 105 lbs, dressed with shoes. I am now at a supportive weight and still receiving Sandostatin injects every 2 weeks. My flushing has created red zones on my face (which I can 'hide' beneath makeup fortunately). I still cannot feel the flushing until it starts to go down my back. When that happens I generally go lay down & try to take a short nap.

I eat a healthy diet. I avoid trigger foods to help reduce my flushing. I walk. I try to stay mentally alert. I will soon be 73. My original oncologist has retired but still keeps a helpful eye on me. I still have many abnormal bowel movements, and periodically mild diarrhea. If I wander off the food choices I was given to follow, I will generally have a problem. My main concern is that I still have an unknown primary of an obviously small size which occasionally decides to make it's presence known.

I wish all of you a long, happy, and vital life! Sandra E. Barkan, Va Beach, Va.

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Replies to "I was diagnosed in 2003 with an unknown primary (still not found) and tumors in my..."

I neglected to include how my doctor treated my carcinoid cancer at the onset, after removing the tumors from my liver.

Dr. Vinik put me on a pump with standard Sandostatin for 3 years and 2 injections every two weeks. My insurance company was not a big fan of that treatment, but they handled it since I was obviously still alive and getting 'healthy'. I have returned to my normal weight. Sandi