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Lost with no confirmation of NETs origin: Innumerable liver lesions
Neuroendocrine Tumors (NETs) | Last Active: Mar 31, 2023 | Replies (77)Comment receiving replies
I do not have personal experience with those two chemo drugs. I am not an oncologist, but I can say my team also wanted to “go hard” at my cancer—thus, with IV chemo, in my case, every two weeks—due to aggressiveness. I also had a new CT scan every two months. PRRT is, as I understand it, one treatment every two months for four treatments (so, over 8 months), and I was told it’s not the best first option for aggressive cases, such as ours. My team also wanted to get it more “under control” and stable before moving to something like PRRT.
I’m so glad you have a plan set forth and I’m sending all the best thoughts and energy your way. Please continue to ask questions if you need!
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@firepowr if you don’t mind me asking, what have they said about yours that is considered aggressive? The Ki-67%? Well differentiated or not?
The approach they have with the chemo is treating it as a small cell lung cancer- even though the lungs are clear. I’m assuming it’s due to the cells that are expressed and how rapid growing they are?
Apparently G3(well differentiated- Ki-67: 70%)NETs originating in the small intestine and Mets to liver is even more rare and no “standard of treatment” found.
Feeling pretty defeated with the prognosis of less than 2years since study’s are limited. This forum gives a little hope to make it past that but have yet to read about situations as aggressive as this one