Okay this is where we are at now. My husband found out December 5th about his diagnosis of Pnets or we thought it was regular cancer not nets at first. Anyhow. We saw the oncologist after the Gallium 68 scan. He recommended Cabo and to possibly go see a speciallist for PRRT. Sharp doesn't offer PRRT. We found out with this test. It has mestasized to the liver, lymph nodes, and bone for heavens sake. He is unfunctional pnets Grade 3 KI67 25%. Working 40 plus hour s and feels fine.
We already had a 2nd opinion set up via zoom call with a net specialist.
The net specialist has a different protocal.
I dont tbink we are going with the Cabo now.
He says that Captem is the gold standard to start with and with liver therapy. Cabo would be something for down the road if needed. Why the first Dr. Suggested it? He must be going by the trial studies and that it is new.
The specialist said he would work with the oncologist or whatever we would like to do. But I think we will go with the net team at one place. He did say that Pnets grade 3 is rare. But isn't this disease rare itself? They want to do more genetic testing. My husband has MEN1 has a genetic gene as well. Just hoping/praying we can get the right protocal to shrink them all considerably. If anyone has a similar case with good results please let me know.