Sslee723 Member Posts: 54

Is Cabo that bad?  I keep hearing about this hand and foot thing and I'm getting nervous. 


  • foxhd
    foxhd Member Posts: 3,181 Member

    I guess you need my feedback. I am following your posts. Votrient took a little while before it became overwhelming for you. My advice remains the same. Try to reduce dosage to a tolerable level.  Maybe 400mg every other day. Unfortunately most dr's won't agree to this because no one else does it. That is not a good enough answer for me. I was thrilled when I failed votrient and had to move on. Cabo was the best indicated drug for me. It is a tki like votrient and I also feared the se's supposedly worse than votrient. But I took it because it is supposed to work on the bones. In short time I decreased the dose from 60mg qd to 40mg qd. Then to every other day. Then to needing a week off every 2-3 weeks. And it still works for me! It will be a year in july. I have been stable since then.

    While on votrient I lost ability to taste. Lost hearing in my left ear. Chronic diarrhea and nausea. On reduced but effective dosage of cabo I regained taste. Hearing 80% better. No issues with elimination. I am actually gaining a few pounds. The foot/hand syndrome was far worse on votrient. I can walk all day and work outdoors without gloves. I do have numerous other neuro issues in my rt. arm and hand but don't forget my history is pretty extensive.

    All in all, I have been aware of only one other person who takes cabo on a schedule based on tolerance. If I continue to remain stable at my reduced dose and freq, I can live this way for years. Happily. When I need a break, I exhibit several symptoms. Most severe is arrythmia. It hospitalized me with a very close call but that was before I learned to manage the drug. I still get sob and lightheaded when it's time for a break but it isn't related to hypotension. I also begin to feel a little psychotic. Time gets blurry, attention span, concentration, and short term memory get elusive. After 2-4 skipped doses I return to myself and start all over again. Works for me. My docs support me, the drug is effective, and I am free to live again.