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NETs growing despite 3 months of capecitabine and temozolomide

Neuroendocrine Tumors (NETs) | Last Active: Mar 21 2:05pm | Replies (37)
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@zacharycat thanks. My tumors are not likely responsive to PRRT.
They said most people only stay on fulfox for a few months because of problems.

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Replies to "@zacharycat thanks. My tumors are not likely responsive to PRRT. They said most people only stay..."
briana311 | @briana311 | Feb 21 11:37am

@djchambers
Can anyone provide side effects they experienced from CAPTEM treatment? I was told complete hair loss from Temozolomide drug. And, has anyone just used Capecitabine drug alone without the Temozolomide drug?

I have a family member with Grade 3 pNET diagnosed June 2025, metastases to liver. Completed 12 rounds of Folfox (some neuropathy in fingers and feet and hair thinning). Most recent MRI, CT and PET scans showed very positive response to the Folfox but of course trying to keep things under control.

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