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Ruth Ann avatar

Carcinoid cancer: Want to meet others

Neuroendocrine Tumors (NETs) | Last Active: Aug 23 1:27pm | Replies (169)

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I was diagnosed with a pnet metastasized to my liver and bones in 8/22. It was functioning, and it blocked two important veins in the area. So, I got very sick. Surgery was not an option. I was 56 at the time. I took CAPTEM chemo, capecitabine and temozolomide, for a year. They shrunk everything. For example, my 8x6cm pnet went to 4x2cm. It didn't block veins anymore. My pancreas and liver started to function properly. After 2 additional years of capecitabine, the cancer has been stable. I am the healthiest that I have been in years. Keep a positive attitude and outlook. It might not always be a cakewalk, but you can manage it. A lot of us here have. We have not only survived, but we now thrive.

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Thank you for taking the time to respond.. I just found all of this out on Friday June 13th.. can you imagine. Went to the ER for something else.. was told '' by the way, you have a NET tumor" (FREAKED me out to say the least. I was to have surgery today for a small intestine ressection .. but they postponed it for 3.5 weeks.......... ANXIETY to say the least. I now know its a grade 1 but not the stage yet until after surgery. So worried about a return.