Anyone have experience with cabozantinib (Cabometyx)?

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.

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

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

@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. 🙏🏻

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.

Anyone taking this treatment for liver nets? What time of day did you take it? Side effects? After taking how long before you ate?
Results?

Hi @gesmone1, I moved your question about cabozantinib (Cabometyx) to this related discussion in the NETs group so you can connect more easily with others on this treatment.

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

Have you started treament with cabozantinib (Cabometyx) now?

Started on Monday. So far no side effects. Felt a little nauseous today. I have been putting Working Hands on my feet twice a day. I am hoping this prevents the hand and foot.

Trying to revive Thai discussion re Experience with CaboZantinib. I have Stage 4 hi grade atypical thymic thoracic neuroendocrine disease after a 7lb tumor removed 7/23. I’ve been thru 8 other types of chemo and 2 rounds of radiation. Now have 2 larger (9x6cm) & 4x4 tumors in chest wall plus at least 10 small ones throughout thoracic region. No chemo has prevented growth of the disease until CaboZ, which recently showed about 20% shrinkage on big tumors after 60mg daily and 70 Days.

Unfortunately mucositis in cold NH has caused some underlying issues to pop up that’s caused suspension for a few months to heal and restart on 20mg. Very dry nostrils and infected septum due to hard nose blowing and relentless picking at what I thought was dried snot vs actual cartilage, jaw spicules after 2 lower molars in a row broke off due to very old fillings and new crowns, but perhaps a bit of sloppy oral surgeon so now open inner wound. Lastly anal fistula that progressed from 4 yr old small fissure that I had developed way before cancer but never addressed (upper rectal phrenotomy or regular Metamucil and miralax?…you choose).
So now addressing all three of these infections and anal correction before resuming at 20mg. Otherwise had no side effects, so now very disappointed mainly in myself for a series of unfortunate and preventable events.

Curious as to others’ experiences?

Functional well differentiated grade 3 pancreatic NET. Folfox got me out of hospital at least and PRRT gave substantial shrinkage and symptom relief. Followed by surgery and now 40 mg cabometxy daily. Many side effects to adjust to but none are intolerable. Shortness of breath, hand and foot soreness, inability to eat certain foods and more fatigue.