Stage 4 stomach NET /liver mets

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Stage 4 stomach NET /liver mets

by AnnieLay on Mon Jul 30, 2018 01:33 AM

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My 57 year old mother was diagnosed in March with stage 4 grade 2 neuroendocrine cancer with her primary tumor in the stomach and many liver Mets. She also has hypereosinophillia which the drs aren’t sure is related to the cancer. The doctors have told us surgery is not an option and given her (tentatively) a couple years to live. She’s been on capesitabine and temozolomide for treatment of her NET, her next CT Is next month in August to check on the tumor growth. Has anyone else had experience with this kind of cancer? I’m wondering if anyone else has had similar treatments, how well they responded, and how they are doing currently? This is my first time in a forum like this to discuss her condition. Thanks so much for any input

RE: Stage 4 stomach NET /liver mets

by matayl on Fri Nov 16, 2018 11:32 PM

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On Jul 30, 2018 1:33 AM AnnieLay wrote:

My 57 year old mother was diagnosed in March with stage 4 grade 2 neuroendocrine cancer with her primary tumor in the stomach and many liver Mets. She also has hypereosinophillia which the drs aren’t sure is related to the cancer. The doctors have told us surgery is not an option and given her (tentatively) a couple years to live. She’s been on capesitabine and temozolomide for treatment of her NET, her next CT Is next month in August to check on the tumor growth. Has anyone else had experience with this kind of cancer? I’m wondering if anyone else has had similar treatments, how well they responded, and how they are doing currently? This is my first time in a forum like this to discuss her condition. Thanks so much for any input

Yes, I was diagnosed with NET and they couldn't find the primary tumor, but assumed that it is in the GI tract or the pancreas somewhere. Stage 4, grade 2, just like your mom. Also on the combination of oral capecitabine and temozolomide for 3 months now (1 round per month - 2 weeks on and 2 weeks off). Mine has metastasized to my liver and bones. About 75% of my liver is occupied by tumors. Bones affected from the femurs all the way to the  skull (but none in the brain!). Surprisingly, I feel fine. I've lost 30 pounds, but those were pounds I needed to lose, so it doesn't worry me, and my weight has been stable now for awhile.

No change in tumor size over that 3 months of chemo. I'm going to take the next 3 months off to see what happens with tumor size when I do nothing.

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