1. < Neuroendocrine Tumors (NETs)

Experiences with cabozantinib

Posted by firepowr @firepowr, Jun 1, 2023

I am interested in hearing people’s experiences with cabozantinib. I was diagnosed January 2020, grade 3, well-differentiated, unknown primary with tumors in liver, pancreas, lungs, bones, and multiple glands. I’ve been through CAPTEM, FOLFIRINOX, FOLFIRI, and most recently PRRT (I only had 3 rounds because I had progression). I am now switching to cabozantinib and would love to hear others’ experiences.

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

Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 9, 2023

I'm tagging @tomewilson. I think his wife's oncologist suggested cabozantinib for her.

@firepowr, when do you start the new treatment?

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firepowr | @firepowr | Jun 9, 2023

I started last Saturday, so almost a week ago.

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alisonn | @alisonn | Jun 12, 2023

My brother was on a clinical trial using cabozantinib and nivolumab. Unfortunately, he had a lot of side effects so went off the trial. However, it had shown that some of his liver tumors were shrinking.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 13, 2023
In reply to @alisonn "My brother was on a clinical trial using cabozantinib and nivolumab. Unfortunately, he had a lot..." + (show)
@alisonn

My brother was on a clinical trial using cabozantinib and nivolumab. Unfortunately, he had a lot of side effects so went off the trial. However, it had shown that some of his liver tumors were shrinking.

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Hello @alisonn and welcome to the NETs support group on Mayo Connect. I so appreciate you advocating on your brother's behalf. That is so kind of you. From your previous posts, it looks like he has had several different treatments.

How is he feeling now? What are his most significant symptoms?

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