1. < Neuroendocrine Tumors (NETs)
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Anyone have experience with cabozantinib (Cabometyx)?

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.

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gesmone1 | @gesmone1 | Feb 4 6:52am

An update to my post in May where I started Cabo 40mg. In December the tumor in my liver had grown. I started alternating Cabo 40mg and Cabo 60mg. The side effects are much worse. Mouth sores/blisters, diarrhea and cramps. I have had low Potassium issues. Two weeks ago I went to 60mg daily. I go back to Moffitt for scans in March. Prayers for stability and shrinkage.
I pray all of you will find a place in treatment that works for your body.

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zacharycat | @zacharycat | Feb 4 10:53am
In reply to @gesmone1 "An update to my post in May where I started Cabo 40mg. In December the tumor..." + (show)
Profile picture for gesmone1 @gesmone1

An update to my post in May where I started Cabo 40mg. In December the tumor in my liver had grown. I started alternating Cabo 40mg and Cabo 60mg. The side effects are much worse. Mouth sores/blisters, diarrhea and cramps. I have had low Potassium issues. Two weeks ago I went to 60mg daily. I go back to Moffitt for scans in March. Prayers for stability and shrinkage.
I pray all of you will find a place in treatment that works for your body.

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@gesmone1 Wish you all the best. 60mg is tough to take both my doctors said. I know 40 is bad enough.
Previously I had hepatic artery embolization and radio frequency ablation.

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rkruzeski | @rkruzeski | Mar 6 10:28am

For stage 4 kidney cancer I just started my third week of 60 mg Cabometyx. I have had a number of side effects however, so far manageable. They have included: high blood pressure (started medicine to control), fatigue, voice changes (raspy/hoarse), muscle spasms/leg cramps, weight loss and sore muscles. I have a doctor's appointment next week for a toxicity check and my next scan in 2 months.

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Teresa, Volunteer Mentor | @hopeful33250 | Mar 10 12:52pm
In reply to @rkruzeski "For stage 4 kidney cancer I just started my third week of 60 mg Cabometyx. I..." + (show)
Profile picture for rkruzeski @rkruzeski

For stage 4 kidney cancer I just started my third week of 60 mg Cabometyx. I have had a number of side effects however, so far manageable. They have included: high blood pressure (started medicine to control), fatigue, voice changes (raspy/hoarse), muscle spasms/leg cramps, weight loss and sore muscles. I have a doctor's appointment next week for a toxicity check and my next scan in 2 months.

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Hello @rkruzeski and welcome to Mayo Clinic Connect. I am glad you found this forum and you are sharing your experience with Cabometyx. You might also find it helpful to post in the Kidney Cancer support group. Here is a link to that group: https://connect.mayoclinic.org/group/kidney-cancer/
In that support group, there is a discussion about metastatic renal cell carcinoma:
https://connect.mayoclinic.org/discussion/metastatic-renal-cell-carcinoma-clear-cell-spread-to-lung/
Have any other treatments been suggested, such as surgery or radiation?

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