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Straight to the liver: Anyone have NETs originating in strange areas?
Neuroendocrine Tumors (NETs) | Last Active: Oct 4 6:02am | Replies (18)Comment receiving replies
I was diagnosed in 2019 with NETS of the liver my tumors were extremely large and had to be removed
The biopsies came back stage 2 and grade 2.5 not metastatic like you very rare
I was told we got it all!!!
2 1/2 years later I was diagnosed with metastatic liver cancer with an unknown origin
Probably somewhere in my gut
Well if it is there 2 years later it still hasn’t should it ugly face
My bloods and all the NET levels where over the top before my resection after all my bloods were normal and to date 5 years later remain normal
I never had any carcinoid symptoms until I started Lanreotide then I got the flushing and diarrhea
My head spins over this!!!!
I have done every treatment they have thrown at me
I am currently doing PRRT I get my last treatment October 9th so far it doesn’t appear to be working
What’s next?? Is always my question
I wish you the best
Keep up the fight
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Glad to learn you pursued PRRT Lutathera treatment series. Others have thought it wasn’t working, only to be surprised to learn couple months after completion that tumors had shrunk or disappeared on scan. Then they report that they had several years of feeling great with disease stability. I hope this is your case too!
I am also having PRRT and receiving 3rd infusion 10/1. I visualize it working and am planning on many good days ahead. Hope is free and I am sending you a bushel basket full!