Anyone have severe abdominal pain with Cabometyx (cabozantinib)?

@lu7 Here is a link to how others experienced Cabometyx:
https://connect.mayoclinic.org/discussion/anyone-taking-cabometyx-1/
How long have you been taking it?

@tomrennie 10 days. When I got sick they drew labs, my LFTs were up and Dr said to stop. Testing tomorrow to see if liver function is back to normal. I imagine starting again.

I would not wait to see whether severe abdominal pain simply gets better with time. Cabometyx carries a rare but serious risk of gastrointestinal perforation or fistula, and the manufacturer specifically tells patients to seek immediate medical attention for persistent or severe abdominal pain.

@lu7 Good luck today. Please let us know how it goes?

@mcharlesfrancis Thank you. I started with labs but eventually landed in the ER and got a CT scan. I expected to hear diverticulitis since I've had it before, but showed only mild colitis. The pain is subsiding very slowly after stopping the med. Not sure what's next.

Don’t know if this information will help but I was told that if you start Cabometyx at the lowest dose let the body get use to it and raise it up gradually the side effects are not as bad
Best of luck

I had abdominal pain and gas with cabometyx. Medication can help and also sleeping in a more upright position.
I don’t take cabometyx now, but that was because of disease progression after about a year on the drug.

@tomrennie I got my labs back and everything was back to normal. I spoke with a Mayo nurse about what I had experienced the past week. I am waiting to hear about next steps. Hopefully today...Thanks to everyone for your input.

@lu7 Yaaay for you. That has to be a relief? I am curious about your next steps. Please let me know when you can. Thanks.

I started back on Cabometyx yesterday. I confess, Im nervous. Hoping for fewer side effects!