Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Cabozantinib after Pazopanib

Sparky_1975
Posted by

Ha, no not a electrician, just a nickname that stuck Ian.

Thanks for the update. Best of luck with the next scans. Fingers crossed for positive news from them. 

Do you have any tips for when you lose your appetite on the medication? Mum was basically on two ensures a day on the Paz but was hoping we wouldnt be back to them days when starting a new treatment :/

IanHilly
Posted by

Not really mate - although constantly being asked 'what do you fancy for your....' doesn't help because inevitably the answer is 'don't fancy anything'. Best thing is to eat what you want when you want it so I have been having 3 or 4 small 'meals' with biscuits as and when. Still lost weight though. Soup is always a good stand by and the other thing is whilst I never 'fancied' anything, once I started eating something I found it wasn't so bad after all. 

The dry, sensitive mouth was also pretty bad - couldn't use normal toothpaste cause it stung so much and I had to get some called Xerostom which is relatively expensive but very gentle on the mouth. 

I would suggest you wait until the side effects kick in though before you start buying stuff as we all react in different ways and to different extents. You can then ask people what they did in response to specifics and save a few bob.

With a bit of luck you Mum will fly through the cabo treatment!

Best, Ian

Sparky_1975
Posted by

Thanks for the tips.

Yes I'm afraid I'm guilty of upsetting mum buy constantly trying to get her different things in the hope of getting her to eat. I've learnt not to although I'm just trying to help I understand it can be upsetting on the other end. You seem to be doing okish thou on the eating front. Mum in the end was hardly touching food before they took her off the Paz. 

Do you have any of the ensure drinks to help you maintain weight with the small meals you eat?

Thanks we will know more next week now on if it is going to be Cabo or Nivo and I'll post an update.

IanHilly
Posted by

Sorry mate, didn't mean to suggest you did. A suggestion though that worked for me was if someone said 'I'm going to have …….do you fancy some'. 

I have never heard of the 'ensure' drinks so no I haven't. Don't get me wrong, if you eat enough of the small meals in a day you are getting the same amount of calories but you are just eating differently from everyone else which can be difficult. For example, going out for meals with the family when you don't really want to eat later in the evening etc. 

Would be interested in looking into them though.

IanHilly
Posted by

Btw, if you post when you see how your Mum is getting on I'd be happy to help if I can.