Is anyone taking cabozantinib (Cabometyx)?

Posted by elainedanielle @elainedanielle, 2 days ago

I was dx with small bowel NET, met to the liver in 2018 (Carcinoid subset). Surgery removed the large primary tumor & some lymph nodes. Too many tumors in the liver by then to consider surgery so it's been ongoing variety of treatments to keep the tumors from progressing. Monthly Octreotide inj eventually failed; the Everolimus eventually failed, Lutathera PRRT in 2023 was effective almost 2 years to the day. MRI in Jan 2026 revealed a significant new growth in a short period. Next-- docs want me to start Cabometyx in the next couple weeks. Side effects look very weird & scary--the most potential side effects than any of my former treatments. I've been to UNC Chapel Hill, Duke and Emory U and all concur. Next on the list is PRRT Alpha, once cleared by FDA. So----is anyone on Cabometyx?

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

zacharycat | @zacharycat | 1 day ago

There have been several mentions of this topic here already. I take 40 mg daily (since June 2025) and have fatigue, occasional shortness of breath and dizziness. Appetite is lower and I have a metallic taste most of the time. Some foods I enjoy I can no longer eat (anything spicy). Frequently I have gas and mild stomach pain (they prescribed protonix for this which I have just begun). Also I seem dehydrated much of the time, especially in the morning.
The medication seems to be effective so far in controlling disease progression, I have an MRI next month.

zacharycat | @zacharycat | 1 day ago

I am also interested in Alpha PRRT (had Lutathera in 2024), so please keep us updated on any progress here.

kjstein | @kjstein | 1 day ago

In reply to @zacharycat "I am also interested in Alpha PRRT (had Lutathera in 2024), so please keep us updated..." + (show)

@zacharycat
My progression and treatments: diagnosed with Nets stage 4 mets to liver Jan. 2021, well differentiated grade 2. Unknown primary and no symptoms. Started Lanreotide 2/21 and then PRRT (lutetium) June 2021 ending Feb 2022. Excellent results (elimination of some lesions & decrease in size of all), continued with SSA after. Some progression on SSA noted in 6/24 and ended Lanreotide and started Everolimus 5 mg (10 mg normal dose caused lung issues and other side effects). Continued on Everolimus until August. 2025 when scans showed progression. Started a clinical trial at Mayo fall 2025 first on high dose Octreotide and then switched to Alpha PRRT after progression noted in first scan on trial since starting high dose Octreotide with first PRRT treatment in February 2026 and second treatment this next week. So far no problems with Alpha PRRT and will post again after first and later scans.

For me, PRRT was the most effective treatment so far and with manageable side effects of fatigue, hair thinning, some appetite/eating changes. Everolimus was most difficult for side effects--mouth sores, metallic taste, fatigue and lung infection on higher dose. No info/experience on Cabozantinib. I believe there are other clinical trials ongoing with Alpha PRRT, but don't have any info about that.
Karen

zacharycat | @zacharycat | 20 hours ago

In reply to @kjstein "@zacharycat My progression and treatments: diagnosed with Nets stage 4 mets to liver Jan. 2021, well..." + (show)

@kjstein Outside of a lung infection I have the same effects from the Cabozantinib.
Was the clinical trial something you found or did doctors at Mayo recommend you for it? I am not a Mayo patient but would travel to take part in such a trial. My doctors don’t really notify me of these things though.

kjstein | @kjstein | 17 hours ago

In reply to @zacharycat "@kjstein Outside of a lung infection I have the same effects from the Cabozantinib. Was the..." + (show)

@zacharycat
My oncologist is at Mayo Arizona and he recommended the trial to me. My other option was to do 2 more treatments of the original PRRT which I would have done. I believe there is a site that lists open clinical trials, maybe on the NETRF website. I was told there are currently several trials of the Alpha PRRT. Good luck finding one. I’ll see if I can find the reference in my files tomorrow and will post if I find it.

Turkey, Volunteer Mentor | @tomrennie | 6 hours ago

In reply to @kjstein "@zacharycat My oncologist is at Mayo Arizona and he recommended the trial to me. My other..." + (show)

@kjstein @zacharycat
The Neuroendocrene Cancer Foundation has trial information on their website. For example, I just found this. Please let me know, if you find anything useful.
https://www.ncf.net/clinical-trials-1/alpha-prrt-with-ryz401

zacharycat | @zacharycat | 3 hours ago

In reply to @kjstein "@zacharycat My oncologist is at Mayo Arizona and he recommended the trial to me. My other..." + (show)

@kjstein Thanks for the useful info. Another question is - Are the radiation protocols after Alpha treatment the same as for the lutetium PRRT?

kjstein | @kjstein | 3 hours ago

In reply to @zacharycat "@kjstein Thanks for the useful info. Another question is - Are the radiation protocols after Alpha..." + (show)

@zacharycat
Similar, but seems a little less strict this time. They seem focused on bodily fluids care and caution, rather than 'giving off radiation" after treatment. My impression was that things were more relaxed this time. Even more important--at least for me the fatigue after treatment was much less (especially days 1 & 2!), and I have been feeling completely 'normal' after the first week. My blood work looks pretty good too--a small drop in RBC count but hemoglobin holding steady. Will post again later this week after treatment 2 on Wednesday.
Thanks Tom for tracking down the clinical trial info!

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