Has anyone had success with Cabozantinib for stage 4 RCC?

Many community members have shared experiences with Cabozantinib, and it's completely natural to feel nervous about starting a new treatment plan. The fact that your medical team consulted with the tumor board shows they're taking a thoughtful, collaborative approach to your care. This community has many people who understand exactly what you're going through with treatment changes, and their experiences and encouragement can be incredibly valuable during this time.

I am on Cabozantinib, starting my second year. I also have infusion treatments with Opdivo. My kidney tumor has responded well, and I have had no new tumors. I had the kidney cancer spread to my sacrum before diagnosis, which was treated with radiation. My life is fine right now except for the damage to the sacrum causing pain.

Thank you Travis. Any major side effects that you’ve experienced?

After a month or so on Cabometyx (Cabozantinib), I had a change in how food tasted. I also experienced diarrhea off and on, maybe every week or two. I probably vomited three or four times in the first six months. My taste returned over time, but I really don't care for deep fried food anymore, and eggs (once a favorite food) still taste bad fried. I stay away from hot sauces, as they irritate my bowels. None of these effects were that bad, for which I am grateful.

Thank you so much for sharing your experiences. I am a bit nervous going into this treatment just because of the side effects. The immunotherapy destroyed my thyroid and it makes me think what a new treatment may bring. But yes if it works, the good outweighs the bad and makes it worth it. You give me some strength here with your positive experience. Thank you for that.

Hi Sam. I too am on Cabometex and Opdivo for my RCC and I also had bone cancer. It was/is located in my right pelvis. I had a girdle stone procedure on my right hip because they did not think a regular hip replacement would work. The medicine combination took a while to work but the nodule of cancer on my right kidney and the few on my adrenal glands have shrunk significantly and haven’t changed in size. My Doc is super pleased with my bloodwork as well. As Travis said. I’ve adjusted to the immuno but am careful what I eat especially a few days after. I also take Xcheiva once a month for bone density The bone is actually regenerating in my pelvis but is still painful. God Bless you and best Wishes this will work

Thank you Rosemary. Immuno didn’t work as I wish therefore my mind goes completely to the negative side. From what I’ve gathered, this medication works but not easy to handle with some potential strong side effects. Still, just reading Travis’s and your testimonies brings me hope therefore a bit of relief. Should get my medication in a week and my second journey will start. Thank you for sharing Rosemary, stay strong and wish you the best in your journey.

Thanks Sam. Maybe you can start Immuno with just a week at a time. I’m able to now just get it once a month. I’m just careful what I eat a couple days before and a couple days after. The cabometex doesn’t bother me too much. Wishing you all the best in this next phase❤️