1. < Neuroendocrine Tumors (NETs)

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.

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laree | @laree | Mar 1 12:38am

Thank you so much for sharing your story. It sounds like you have gone through a lot of hoops! But you seem to be enjoying life! It has been 5 years so that is a good sign. My husband has suffered from kidney stones most if his adult life. That is why he went to get a scan done in the first place. The last few years he has had some bad episodes. The more I investigate the more everything is unraveling. MEN1 is a genetic condition that also creates calcium type kidney stones. It seems if he had genetic testing prior to this it might have came out. And then you could test for other things that would be related to MEN1. So frustrating.
We are going to cancel Cabo and start CAPTEM asap I am hoping. I will be out of town soon and I hope he will be okay on CAPTEM.
I find that it is really sad that you don't hear about this disease. All the funding is for other cancers it seems. Even with Steve Jobs the media labeled the known stars as Pancreatic cancer which is not really what it is. I am praying that they will find even better medicine for net patients as time goes on during the fight. There needs to be more awareness. It sounds like more people are getting diagnosed with this diease more often. I am glad you are comfortable with your net team. That is a really big deal and important.
I will see how it goes for us the next couple of months. Thank you for your words and support. We are going to UCSD, Southern Ca.

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laree | @laree | Mar 1 12:42am
In reply to @hopeful33250 "Hello @laree, I am glad you had a consultation with a NET specialist. I look forward..." + (show)
@hopeful33250

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?

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I will definitely report soon about that.
Thank you for asking.

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laree | @laree | Mar 1 12:51am
In reply to @firepowr "Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending..." + (show)
@firepowr

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

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I did reply. I hope you see it. Thank you

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laree | @laree | Mar 13 4:12pm
In reply to @hopeful33250 "Hello @laree, I am glad you had a consultation with a NET specialist. I look forward..." + (show)
@hopeful33250

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?

Jump to this post

@hopeful33250
Hoping to start in the next 7 days. It is getting REAL. My husband has a hard time taking any medication so with this it is going to be difficult. I hope he tolerates it well. I think we need mental health right now more than anything. 🙏🏻

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 14 1:57pm
In reply to @laree "@hopeful33250 Hoping to start in the next 7 days. It is getting REAL. My husband has..." + (show)
@laree

@hopeful33250
Hoping to start in the next 7 days. It is getting REAL. My husband has a hard time taking any medication so with this it is going to be difficult. I hope he tolerates it well. I think we need mental health right now more than anything. 🙏🏻

Jump to this post

I understand, @laree, that this can be a frightening process! Mental health help through counseling is a great idea. Keep posting and let me know how you and your husband are doing as you travel this NETs journey together.

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