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Neuroendocrine Tumors (NETs) | Last Active: Jun 23, 2023 | Replies (38)
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Good morning. Still a little confused as to what they will end up doing for my sister. She is still waiting on them to call her to schedule her first pet scan. She is going to call them tomorrow if she doesn’t hear from them. I really appreciate all the information you’ve given me thus far. The part I’m confused about is the oncologist that is seeing her right now said that it would only be 2 chemo pills. I’m wondering if we misunderstood, but I’m going to be sure and ask. How are you feeling today?
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It technically is two chemo pills; capecitabine and temozolomide. You will take more than two of them unfortunately. I physically feel ok today. My body needs another day or two to recover. That's it. Usually, I would be great emotionally. But, this is a third month. I get scanned again on July 3. I meet with the oncologist on July 6. Is the CAPTEM still working? Did my tumors shrink more? Or didn't they? I only had a little nausea this time and didn't vomit at all again. Is that cause the chemo stopped working? The mental and emotional side of things are the hardest. You have to live with that unknown almost all of the time. That can be hard to manage.