NETs growing despite 3 months of cap/temo

Posted by djchambers @djchambers, Feb 4 10:37am

I've been on cap/temo for 3 months, with some very annoying side effects. Just got the results of CT scan. My two tumors have grown. My Louisville oncologist is suggesting standard chemo and having a port installed. He says without that I can expect 6 to 12 months before my tumors become terminal.
I have requested an appointment with Dr. Hobday at Mayo in Rochester whom I’ve seen before. I hope he will give me recommendation for best treatment. I have not heard back yet.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

The tumors are grade 3 but well differentiated.

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I am not a doctor ......
Have you had a PET scan?
Depending on results your team may consider PRRT

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Unfortunately, The last PET I had indicated my tumors would not be responsive to PRET.

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