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Hello All,

I'm a first time poster. Ive just had my left kidney removed because it had a large tumour on it and I was weeing  a lot of blood. Today I started a course of Cabozantinib, one tablet a day for 28 days. The possible side FX look scary...and yes , I know if you read the side FX of paracetamol you'd never take that either! So has anyone got any good advice? I'm hoping to go to see Bruce Springsteen on 22nd May in Sunderland, is that going to be possible in anyone's experience? The chemo nurse I spoke to said " why not" ? But I'd rather be realistic.

  • Hi there hope you are having a good Monday and recovering from the kidney operation.

    I can give some experience from my story I had my right kidney removed in 2021 like you after weeing lots of blood .I had immunotherapy first for 6 months but then went on to cabozentinb 60mg tablets for 6 months had positive results first and the only side effects I had was a little bit of diorerrea and sickness all controlled with tablets ,I also had periods of loss of taste and very sore mouth it came and went throughout the treatment.

    I was able to function normally working full time and went on a few holidays abroad without issues ,so in short continue as normal as you can and enjoy life.

    Hope it helps any questions let me know all the best Ryan 

  • Cheers Ryan, thank you for replying. I'm very encouraged by what you say. I'm keen to get back to work, so it's useful to know you worked full time. Can I just ask how you took the tablet...the two hours after food to take, and one hour before eating after taking? Did you take it first thing on an empty stomach? Currently I'm having breakfast and taking it two hours later at 10.15. Gets in the way, though.

  • Hi again I got into a routine of getting up early to take the tablet on an empty stomach and having breakfast after the hour seemed to work well and didnt get in the way of the daily routine.

  • I'm on different immunotherapy (nivolumab) but I would suggest Bruce Springsteen is perfectly realistic.  Immunotherapy is not as harsh as chemo, although everyone reacts differently.   It's good you have a few weeks after starting cabo to gauge it. 

  • Thanks you for replying. I'll certainly be trying to go, but I've learned over this process not to take anything for granted! 

  • Indeed!  My mantra is "the only certainty is that there is uncertainty".   Your name indicates your optimistic approach!