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Complicated NET Surgery Needed
Neuroendocrine Tumors (NETs) | Last Active: 9 hours ago | Replies (21)Comment receiving replies
@hopeful33250 I see you were directing your question to @dadcue, but I figured I'd add my 2 cents. My 1st injection was June 11th. Since then my symptoms of severe flushing and pain in the liver area have subsided greatly. I'm waiting to get the results of a recent blood test to check chromogranin levels to see how effective the initial Lanreotide injection has been.
Replies to "@hopeful33250 I see you were directing your question to @dadcue, but I figured I'd add my..."
@hammerhead225 and @hopeful33250
My CgA, serotonin, insulin, pancreastatin and gastrin levels are all elevated but I can't say I feel that bad. None of these levels are super high but I'm told they aren't good. I haven't felt great for a long time so maybe I won't feel any different. The last 5 years were much improved compared to the previous 20 years. This NET is just the next thing I need to deal with.
I'm more afraid of what they might find if I do surgery. My Dotatate Scan was intense in a couple of places but diffused low level intensity everywhere else. The low level intensity areas were described as areas of inflammation. I was surprised I have inflammtion because I'm on a biologic that stops my inflammation. The surgeon wants to stop the biologic that suppresses my immune system before doing surgery. I don't think that is even remotely possible.
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@hammerhead225 I appreciate your update on your first injection. I'm sure you're pleased to notice a lessening of symptoms. Will you be receiving your second injection soon?
Were there any side effects from the injection? Will you keep updating me on the results?