Anyone taking Cabometyx?

Posted by baker23 @baker23, Sep 22, 2025

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.

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

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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Also getting lanreotide shot once a month.

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

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For those on Cabometyx, does anyone have any nutrition do’s and dont’s to share? Anything that makes identified side effects more difficult or easier to manage?

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Hi. Watch out for drying tissues throughout your body. Especially during winter. My nostrils ran and dried up so I started lightly rubbing picking and blowing nose hard in shower. Unbeknownst to me I was digging away at cartilage and now have small perforation between septum and beginning of staph infection. Keep lubricated w neosporin otc or mupirocin prescription if you can get that preventatively.
Be very careful with any dental work. I had 2 molars crowned which resulted in jaw spiccules (bony outgrowths) and hard to heal wound like a canker sore likely from a slip of the dentist’s tool or needle which has hard time healing.
Your bowels: stay diligently regular via Metamucil and MiraLAX every night. Not just a bowl of cereal! I was but fell off wagon resulting in bad hemorroid which turned into fistula and had a fistulotomy.

I’ve felt relatively healthy on 60mg daily until all three of the above occurred at same time and have lost 20lbs 155-135 due to lack of will / hard to eat anything solid w mouth issue and hesitation to eat regular food which would produce a “good solid” bowel movement (over a more gentle liquid diet movement).

Huel protein powder has real sugar and ingredients vs artificial sweeteners and CrossFit friends recommended it. Use as a supplement instead of meal replacement though to keep up weight. 400cals in 2 scoops/16oz with water. Not to mention adding milk

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Profile picture for haramir @haramir

For those on Cabometyx, does anyone have any nutrition do’s and dont’s to share? Anything that makes identified side effects more difficult or easier to manage?

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Hello @haramir and welcome to Mayo Clinic Connect. I see that @triumph955 has already responded to your post. How long have you been taking Cabometyx? Have you had many side effects?

As this is your first post, please share, as you are comfortable doing so, a little about your journey with cancer. Was it diagnosed recently? Have you had other treatments in addition to Cabometyx? I look forward to hearing from you again.

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I just started 60 MG just over two weeks ago on February 17, 2026, for stage 4 kidney cancer. So far side effects are manageable. They have included high blood pressure, fatigue, very dry skin (it is winter so somewhat expected), muscle cramps/spasms just started, and my voice is horse/raspy. The high blood pressure has improved after going on medicine. I go in next week for my 3 week check up with the doctor. Next scan will be in May. Praying for positive results.

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Yes very similar side effects. Blisters on tips of fingers as well. I use Working Man’s hands for feet and hands and it has worked pretty good. I was on 40 mg for 8 months. 60mg for almost three months. Blisters in my mouth and toung is very sensitive. I go for scan next Wednesday. Prayers with you.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @haramir and welcome to Mayo Clinic Connect. I see that @triumph955 has already responded to your post. How long have you been taking Cabometyx? Have you had many side effects?

As this is your first post, please share, as you are comfortable doing so, a little about your journey with cancer. Was it diagnosed recently? Have you had other treatments in addition to Cabometyx? I look forward to hearing from you again.

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@hopeful33250 I posted on behalf of my brother who has NETS tumors all over his body. They started him on Cabometryx after several other treatment plans. He appears to be doing better managing side effects than he was before. I wanted to get some nutrition do’s/dont’s if there was anything, in particular, we could do to help him eat healthier, if needed to mange side effects. Right now, he still eats whatever he wants. Maybe that’s okay. We don’t really know. Thank you.

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