Cabozantinib and Loss Of Appetite: What Users Say

• Dic...
• Taken for 1 to 2 years
• September 7, 2019

Cabozantinib for Renal Cell Carcinoma "Began treatment with 60mg Cabometyx. Side effects were severe in some instances: foot pain to the point that I could barely walk, acid reflux, indigestion, loss of taste, and appetite. The obvious result was I lost about 50 lbs in about six months. Not a pleasant experience, however, we reduced the dosage to 20mg. Appetite returned, along with taste, no acid reflux, minor indigestion, no foot problems. Now starting with alternating 40mg/20mg daily. My remaining kidney has small cysts but has shown no issues. Nodules in my lungs remain small. I am now into my 16th month with the drug and have learned to live with it by isolating taking it in the middle of the night, far removed time-wise from eating anything. I concentrate on alkaline foods to decrease acidity. Gained back 20+ lbs and feel normal but with some minor foot issues. The drug appears to be doing what it is supposed to do, with only minor inconveniences. Good support from Oncologist and staff helps."

• 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."

• 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."