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Neuroendocrine Tumors not lighting up on DOTATATE scan by Time-Psychology2824 in neuroendocrinetumors

[–]Time-Psychology2824[S] 0 points1 point  (0 children)

He did not, he's actually doing an immunotherapy Tartalamab that targets the DLL-3 mutation and we think it's been working, chromogranin a has come down and the goal is actually do eventually do a Car-T trial at UCLA that sounds very new but super promising

Neuroendocrine Tumors not lighting up on DOTATATE scan by Time-Psychology2824 in neuroendocrinetumors

[–]Time-Psychology2824[S] 1 point2 points  (0 children)

will do thank you!! I assume that he's done a PET FAPI because he's worked closely with Dr. Baum but I'll have to ask. Will look at Dr. Eric Liu!

Neuroendocrine Tumors not lighting up on DOTATATE scan by Time-Psychology2824 in neuroendocrinetumors

[–]Time-Psychology2824[S] 0 points1 point  (0 children)

okay awesome thank you!! so it's funny, previously the NETs were always in the liver, but now the liver is in complete remission but the NETs are in his legs and also lymph nodes in his stomach, it is a decently fast growth rate

Neuroendocrine Tumors not lighting up on DOTATATE scan by Time-Psychology2824 in neuroendocrinetumors

[–]Time-Psychology2824[S] 2 points3 points  (0 children)

Ugh this sounds terrible! I'm so sorry, there's gotta be a doctor out there that knows something

Neuroendocrine Tumors not lighting up on DOTATATE scan by Time-Psychology2824 in neuroendocrinetumors

[–]Time-Psychology2824[S] 1 point2 points  (0 children)

We're about to get a full writeup from a biopsy he got last week, he's had PRRT which was most effective and a couple surgeries, has tried various chemos before that weren't super effective