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@bnjncrew

Hello, My husband has the same. He was put on everolimus at the same time as starting 5FU folfox treatment and stayed on the everolimus about 6 weeks. He has also been on OCTREOTIDE 28 day shots for over a year. He did folfox 5FU for 6 months and had to stop, his sugars were stable for 10 months. He is currently on CAP/TEM treatment and sugars are so far stable after first round. If you have access to a cancer treatment center you may want to explore what they do for this very rare NET cancer. We started at a major medical center and they wouldn’t even talk about chemo. We switched to a cancer center and they have done so much. We wish you the best.

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Replies to "Hello, My husband has the same. He was put on everolimus at the same time as..."

Thank you for sharing. If I have learned anything on this new journey it's that everyone seems to react differently so it's a very personal treatment plan, which makes things so hard sometimes!

This means (at least to me) that it's a good thing for the people with this to talk to each other to learn things too, and not just depend on one doctor or one treatment.