Cabozantinib and Mouth Sores: What Users Say

• Jos...
• Taken for 1 to 6 months
• August 22, 2024

Cabozantinib for Renal Cell Carcinoma "I had a nephrectomy. 4/5 months later, metastasis on the right lung, by 14 months, I had full metastatic cancer of the lung, liver, and vascular stomach. I was given immunotherapy and had awful side effects, coughing up blood. I also have P.E. Then put on Cabometyx, 5 months later, I feel fine. I had initial mouth ulcers, I think from immunotherapy. Cabometyx seems to be working better than expected. I'm 2 years and 3 months since the diagnosis of a 12 cm tumor on the right kidney, thrombosis of the IVC. I had thrombectomy and nephrectomy together. Very aggressive tumors. I'm expecting Cabometyx to buy me more time as no other treatment worked. 48-year-old male."

• Jak...
• Taken for 6 months to 1 year
• June 3, 2020

Cabozantinib for Renal Cell Carcinoma "I have been on this drug Cabometyx for 12 months. It’s doing what it's supposed to do, but after 11 months, I started to max on toxicity. Tried to drop dosage down to 40 mg, but didn’t work well. Symptoms for me were severe body acne, including scalp, tiredness, and mouth ulcers. No problem with upset stomach, diarrhea, or weakness in joints. Tried some other inhibitors like Inlyta and IL-2, but side effects were too much, and results of the scan were not very positive."

• Tum...
• June 16, 2018

"I rated it a five only because I do not know how to rate a chemo drug. I was involved in the clinical trial for cabozantinib a few years ago. I was on it for about 8 months. After many other treatment options over the past few years, I’m back on cabozantinib. I have experienced pretty much all the “common and less common” side effects. The worst would be the mouth sores and the hand/foot syndrome. Now, we can all get annoyed about what the medication does to us, but remember, if you’re taking it, chances are you or someone you love has cancer. Unfortunately, cancer treatment is not supposed to be enjoyable. It SUCKS!!! I have an extremely rare form of cancer. My suggestion is to ask your doctor if it’s possible to take “breaks” from cabozantinib. I’m sure it differs for all of us, but if you stop taking the medication, no matter if you are on 20, 40, or the dreaded 60 mg, for about 4-6 days depending, your side effects will start to go away. Good luck everyone and stay strong. Our families need us."

• Ano...
• Taken for 1 to 6 months
• May 31, 2025

For Renal Cell Carcinoma "I have been on cabozantinib now for approximately 3 to 4 months with a couple of breaks to help very sore mouth side effects. First scan after approximately 6 to 8 weeks on 40 mg showed the main metastatic tumor in the adrenal gland had shrunk significantly and a couple of smaller lung mets also reduced. Before this drug, I had immunotherapy which didn't do much and tivozanib, which also wasn't effective. Side effects differ for individuals, mine are mostly mouth issues, trouble eating, and no appetite. Lost 2 dress sizes, a couple of stone. However, when I saw the scans, I realized it was actually doing something, and after what seems like a long time of feeling terrible and often hopeless, it was like being told I'd won the lottery! I'm not naive, I know it's finite, but I'll take it for now. Dose now reduced to 20 mg, which has made mouth issues much better, still there but manageable. Apprehensive for the next scan to see if it continues. Other issues causing pain, etc., broken collarbone, which doesn't heal. I've learned to live with it."