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First scan after 3 months of lanreotidec

Neuroendocrine Tumors (NETs) | Last Active: Jun 23 8:12am | Replies (11)

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THANKS for kindly answering

Yes seeing a NET specialist … and will try to control my expectations!

Take carec

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Replies to "THANKS for kindly answering Yes seeing a NET specialist … and will try to control my..."

I've been on the same journey. Diagnosed March 2024 with PNETS.... Grade 2, Stage 4 metastasis to the liver and regional nodes. Had to get a billiary stent put in right away as I was going septic. That was successful and took away all symptoms. Did you did a stent? After 6 months on Lanreotide my scans showed progressions. My next step would be PRRT or Chemo. I had atleast 20 lesions in my liver and it was unoperable. Right now there is a nationwide phase 2 clinical trial going on for people with GNETS/PNETS... Stage 4, Grade 1 or 2... It involves receiveing 6 doses/infusions of PRRT w/ LU177 instead of the FDA approved 4 infusions. They are trying to determine if 6 doses is better than 4. I'm about to receive my 4th and after two scans were showing about a 20% reduction in size and ceased progression. Doing another scan next week. So far no further metastasis. They are hoping i can eventually get a liver debulking surgery if the PRRT can shrink the tumors enought. They won't let me post a link to the clinical trial on here but this trial is being performed around the country and didn't medical centers and medical institutions. Go to the OHSU (Oregon Health Science Center) webpage and look up clinical trials for Cancer. You will see the clinical trial i'm referring to and it wall also show all the other places in the US it's being carried out. Let me know if you decide to pursue it.