New to this

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!

Hubby takes his Cabo every night - before bed.  

Side effects are all manageable.  He lives a near normal life and even plays golf twice a week (albeit with a buggy)  

Thanks Mumra. I'm coping quite well, I get up early to take the Cabo..and then go back to bed for an hour. That way I  have breakfast with everyone else. I've gone back to work for a couple of days a week, too. Feel a bit tired, but I can cope with that. I love being a bit " normal". Best thing is that the scan I've  just had reveals that it is working! My big problem is a sore mouth..particularly my tongue. It's making eating difficult. If anyone has a any fixes for that, I'd love to hear them!

Are You taking the mouthwash and Gel that Macmillan nurses will supply? 

Hi just wanted to reply to your sore mouth comment .it was my worse side effect to I regularly skipped meals due to the pain from eating it was all on my tounge too.

I found the mouthwash didn't really work the best solution I found was a bit of bicarbonate of soda mixed with water took the edge off the pain.

They went away fully within a week or 2 of when I was taken off carbo after 6 months.

Have a fun weekend all the best Ry