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Posts (8)

Feb 8, 2018 · Time misused in Neuroendocrine Tumors (NETs)

Lost my place in the Rova T clinical trial, which has devastated me. Could have shortened my life significantly.

Feb 8, 2018 · Time misused in Neuroendocrine Tumors (NETs)

Diagnosed April 2018, have had six rounds of chemo, starting on oral chemo tomorrow , for whatever it is they saw on the head MRI.

Feb 8, 2018 · Time misused in Neuroendocrine Tumors (NETs)

Yes, I was starting 2/7

Feb 8, 2018 · Time misused in Neuroendocrine Tumors (NETs)

I have not yet, I’m ready. Going to Barnes hospital now

Feb 8, 2018 · Time misused in Neuroendocrine Tumors (NETs)

I have had ampulla of vater small cell cancer with Mets to the. Went through my regimen of chemo, waited 3 months to qualify for RovaT trial, after waiting so long finally qualified for studied. Yesterday I was supposed to start. My regular oncologist wasn’t there so another came in and told me there was small lesion on my MRI, they aren’t sure what it is but knocked completely out of the trial. Will take huge amounts oral chemo for six weeks then another MRI, I doubt I can get back there was a waiting. I’m so pissed! Instead of sainting for 3 months, I could have liver ablations, proton beam to the pancreas. Also I believe we could have done a CT guided biopsy, and know what is was right at that time.

Dec 1, 2017 · Treatment for Stage IV Ampullary Cancer in Neuroendocrine Tumors (NETs)

I had gerd for years so I had EGD’S a lot. Had a cholecystectomy 5 years ago. Had ercp 2015 for sludge. Had another in sept of 2016. April of 2017, was jaundiced had ercp with stents. Biopsies came back small cell cancer, very rare. ESU confirmed Mets to liver. Have been through regimen of chemo with significant shrinkage of tumors. Trying to get into Rova T clinical trial at Barnes. I’m a 40 plus year OR Nurse, so I realize what’s going on. I will accept nothing but a cancer free report. Liver ablation, removal of cancer at ampulla of vater. Hipec procedure, radiochemo or what ever treatment it takes. That’s why I feel that the Mayo is best for me.

Dec 1, 2017 · Treatment for Stage IV Ampullary Cancer in Neuroendocrine Tumors (NETs)

I have stage IV cancer of ampulla of Vater, mets to liver. It is rare because it is small cell. Have had my regimen of chemo, would like surgery to remove tumor, hippec after. Ablation of liver tumors. Pinpoint radiation.

Nov 30, 2017 · Second opinion from mayo how to in Neuroendocrine Tumors (NETs)

How to get a second opinion from mayo