Thank you for all the information. I have nonfunctioning lung to liver Net just found out in July so new for me. I have atypical cacinoid in lung 5-7% and diffuse multiple mets in liver one large others small. Ki67. Asymptomatic except for shock at having diagnosis. NP at Moffitt said if you are going to have something best kind to have as manageable as a long term condition. However for non functioning treatment is limited. Was glad to hear Tom's wife doind so well on Afinitor 10mg for four years. That concurs with Dr. Willin head of Mount Sinai in NY who said he has patients who do well on it for years. Another helpful presentation was the 2020 update called ABC.s of NET that included Dr, Willin and five other expert physicians describing NET as unique syndrome. I am at Mayo now and having scans every 4 months and working a local onc for monthly bloodwork. Some odd bloodwork like super high B12 levels bot nothing too remarkable and remain asymptomatic have been able to d/c the dex mouthwash after 5 months after reading Dr, Mary Hogan ( who instituted use of dex wash) that after 8 weeks could titrate down and do prn. Thank goodness Novartis pays for afinitor at 25K a month.

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