Anyone have experience with cabozantinib (Cabometyx)?

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

@firepowr, when do you start the new treatment?

I started last Saturday, so almost a week ago.

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.

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?

Has anyone had any side effects starting this med? 60mg is what they are suggesting and for how long did you take it for?

@laree, I moved your question about cabozantinib to this existing discussion in the NETs groups so you can connect with others like @firepower and @alisonn.

- Anyone have experience with cabozantinib (Cabometyx)? https://connect.mayoclinic.org/discussion/experiences-with-cabozantinib/

@laree, have you started cabozantinib yet? How are you doing on it?

Okay this is where we are at now. My husband found out December 5th about his diagnosis of Pnets or we thought it was regular cancer not nets at first. Anyhow. We saw the oncologist after the Gallium 68 scan. He recommended Cabo and to possibly go see a speciallist for PRRT. Sharp doesn't offer PRRT. We found out with this test. It has mestasized to the liver, lymph nodes, and bone for heavens sake. He is unfunctional pnets Grade 3 KI67 25%. Working 40 plus hour s and feels fine.
We already had a 2nd opinion set up via zoom call with a net specialist.
The net specialist has a different protocal.
I dont tbink we are going with the Cabo now.
He says that Captem is the gold standard to start with and with liver therapy. Cabo would be something for down the road if needed. Why the first Dr. Suggested it? He must be going by the trial studies and that it is new.
The specialist said he would work with the oncologist or whatever we would like to do. But I think we will go with the net team at one place. He did say that Pnets grade 3 is rare. But isn't this disease rare itself? They want to do more genetic testing. My husband has MEN1 has a genetic gene as well. Just hoping/praying we can get the right protocal to shrink them all considerably. If anyone has a similar case with good results please let me know.

Well deferientated grade 3. Thank you.

Hello @laree,

I am glad you had a consultation with a NET specialist. I look forward to hearing how the new chemo works for your husband. How is he feeling?

Good morning!!!

As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending on biopsy), well-differentiated, unknown primary (although they suspect pancreas or lungs), with mets to liver, adrenal gland, parotid gland, and bones. I see a NET specialist at Mayo Rochester after being misdiagnosed by my local oncologist initially, and I am so glad I did. The treatment plan changed drastically once I had the second opinion from a specialist.

I started on CapTem (2 months) and unfortunately, I did not have a valuable response and had to switch treatment quickly. I then did 10 rounds of Folfirinox (with some tumor shrinkage--stopped due to neuropathy and they hoped to be able to use oxaliplatin in the future again--I am so glad we did this), 50 rounds of Folfiri (with scan stability, no shrinkage) over 2 years until my cancer started to outsmart it.

I then did 3 rounds of PRRT with octreotide injections with the treatment only (no in-between shots) after a new PET scan showed I had better receptor response than I did originally. My understanding, for me, is that if I had shown better uptake in 2020 they may have started with PRRT instead of CapTem. I did not do the 4th PRRT under advisement of my medical team at Mayo because I was showing too much progression at that time. That is when I started Cabo. I was only on Cabo for 2 months because I didn't have a good response to that one, either--I had a lot of tumor progression in my liver, especially.

By fall of 2023, they wanted to do Folfox to get my tumors under control again. We did 4 more rounds of that until October 2023. I then did about 8 months of immunotherapy (ipinivo) until scans showed progression in June 2024. Started Afinitor (everolimus) 10mg in June 2024, reduced to 7.5mg in July because of really low blood counts and side effects. I stayed on 7.5mg until February 2025 when I started showing progression again. For me, I LOVED Afinitor because I had very few side effects and actually felt pretty normal on it. Energy, appetite, taste/smell improved and it was wonderful.

The team at Mayo decided to put me back on Folfox to try to get control of things again two weeks ago. I think they hope to do at least 4 rounds if I can tolerate it. Honestly, it's not real clear at this point what the next treatment for me would be. I'm just taking it one day at a time. Trying, anyway. 🙂

All of this to say--I completely, 100% trust my NET specialist. I am a medical provider myself and had never even heard of this kind of cancer before I was diagnosed. It is so unique to each person and everyone has a different recipe that works for them. Many of the treatments my team thought would work didn't, and those they thought I'd only be on for a short time I've done a record number of rounds.

Sending all of my love and many hugs to you. Please feel free to reach out or ask questions.
Take care,
Brenda