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NET lung with Liver Metastasis (stage 4)

Neuroendocrine Tumors (NETs) | Last Active: Apr 20 9:33pm | Replies (19)

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@bluedane

Hi @aliatl

I was diagnosed with lung to liver net July 2021; first dr very negative: however Mayo much better. Many of us are at stage at time of diagnosis and some net doctors do question staging relevancy with this disease because so unpredictable. At any rate my lung nets are Grade 2 and Ki67 5% with many liver nets. Mine are also non functioning so most treatments are not helpful except affinitor, Captem and Radioembolization and bland embolization You need to find out your wife.s grade of tumor in lung because if grade 3 my understanding is that needs to be addressed as small or non small cell lung cancer and treated as such. You need her Ki67 number as well which tells you how much it is expressing. The liver mets can be addressed separately possibly as liver nets but you need to clarify lung net and what grade it is. You really need an expert team. With my grade 2 the affinitor kept things stable but not sure about if your wife has grade 3 as more suitable for chemo. Affinitor worked well for me but some growth in liver mets switched me to Captem in my opinion made things worse in the liver so that I advocated foe embolization to help with innumerable liver masses. Important note the liver is a very remarkable organ and even with all this met in it is functioning well. My hope to shrink down largest liver met and in between embolizations get back on affinitor which successfully prevented spread to anywhere else in my opinion/ will be negotiating that. Bring a notebook when you go to the doctor. Best wishes to you and your wife in this journey!

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Replies to "Hi @aliatl I was diagnosed with lung to liver net July 2021; first dr very negative:..."

Hello @bluedane
Thank you so much for your input! They never did biopsy from her lung, however they did from her liver and since her lung had the largest mass up to 7 cm, based on her liver biopsy they found out that it's NET and the ki67 was measured 8%. Doctor was confident that primary is lung with Mets to liver, hip, and her breast. Today we are at infusion center and her 3rd cycle started. Doctor told us the CT result is encouraging and the disease is stable. Doctor said we will continue the chemo for 2 more cycles (total 4) and then we do MRI. If everything is stable she remains on her immunotherapy only for the next two years every 3 weeks. She (Doctor) believes surgery on liver is not an option . I shared other medications that you guys used and she said due to her grade of tumor the medicine she receives is the best at the moment. We hope everything goes well and I wish you the best . Stay informative, strong, and positive (ISP)