1. < Neuroendocrine Tumors (NETs)
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Anyone taking Cabometyx?

Posted by baker23 @baker23, 5 days ago

I was on everolimus in 2024 liver NETs did not shrink. Stopped in June 2025. Had Y 90 June 2025 treating right posterior lobe with severe vomiting and pain afterwards. Then doctor put me on Cabometyx 40 mg since July. CT in Sep showed slight shrinkage of large tumor posterior right lobe. Still innumerable tumors left lobe with 2 showing more enhancement. Continuing cabometyx until next scan in December.

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zacharycat | @zacharycat | 5 days ago

I have taken the cabometyx 40 mg since June. Ok for the most part, but side effects are dizziness, occasional shortness of breath and headaches. Have a PET scheduled for Oct.

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zacharycat | @zacharycat | 5 days ago

Also getting lanreotide shot once a month.

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baker23 | @baker23 | 5 days ago
In reply to @zacharycat "I have taken the cabometyx 40 mg since June. Ok for the most part, but side..." + (show)
Profile picture for zacharycat @zacharycat

I have taken the cabometyx 40 mg since June. Ok for the most part, but side effects are dizziness, occasional shortness of breath and headaches. Have a PET scheduled for Oct.

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Side effects for me are foot and leg muscle spasms at night, diarrhea and constipation intermittently, and GERD. All somewhat manageable.

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zacharycat | @zacharycat | 5 days ago

Have GERD occasionally also, after taking the med. Seems to help to lie somewhat inclined, rather than flat.

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