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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Neuroendocrine Tumors (NETs) | Last Active: Apr 15 10:57am | Replies (80)
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@tomatlanta

Thanks for asking. My wife is in the middle of her first 14 day round of Captem. So far pretty good; minor GI discomfort and good energy levels at start of day but fatigue as the day goes on. The plan is for 6-9 months of 14 days on and 14 days off with CT scans at 3 month intervals. With a very large tumor the goal is shrinkage. We are hopeful that the therapy will work but if not there will be alternate avenues.

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 13, 2023

Hello @tomatlanta,

I appreciate you sharing about your wife's journey with a NETs diagnosis. Everyone's journey is different and I'm glad that she has found a treatment plan. You are right when you say, " We are hopeful that the therapy will work but if not there will be alternate avenues." There are many new therapies on the horizon for NETs, especially for liver NETs. Are you familiar with liver embolization? We have members on Connect who have discussed this type of therapy.

I look forward to hearing how your wife is doing. I so appreciate you advocating for her and learning as much as you can. This is so important. I hope that she continues to respond well to the therapies in place and I also hope that you keep posting with updates, questions or concerns.

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