switching from Nivo to Cabo after progression

You going on  cabonanzinib?

Ive been in cabonanzinib for around 5 months, seems to be working well

good luck 

Yes, it my partner going on to cabozantinib.  Glad to hear it’s working for you.  Have you had shrinkage and how are the side effects? Were  you on treatment previously? Sorry for all the questions

Evening 

yes I’ve had pretty good shrinkage, in total I’ve had 11 kidney tumors kidney removed part lung removed one more treated by radiotherapy one on brain treated by cyber knife one on rib cage one on adrenal gland and the rest in pelvic bone area all remaining tumors  are shrinking and a few have disappeared, no side effects for first month then sore mouth leg joints and muscles pain in legs lasted about three weeks  then diarrhoea lack of appetite  bit of weight loss and tiredness so having a week off treatment to let bloods and body repair, having said all that I do feel pretty good most of the time and do get out and about and still have good walks with the dog have a look at my profile some of it may help 

good luck 

that’s really good to hear. i’ve heard some horror stories about cabo side effects and that is one of the things worrying me the most. our boys are still young-ish so Mark still loves getting out and about etc 

Hi Pugs2411,

Yes, I changed from nivolumab after 5 months to cabonanzinib I have been on this for 9 months now, it seems to be shrinking my tumours, I had a scan last Friday so I will let you know if still shrinking fingers crossed, I was diagnosed in 2019 with kidney cancer in both kidneys, I had my left kidney and spleen removed December 2019, which they did say that it was only in my kidneys, I was supposed to be having my lower part of my right kidney removed, but after recovering from my op they found that the cancer had spread to my lungs as well as the kidney tumour growing, that is when I had to go on the novo, which did shrink the lungs tumours, but not the kidney, on both treatments I have only had minor side affects which are manageable, the only real problem is my taste has been affected food is just  not good   
Good luck with your partner’s treatment 

Sandy

Good morning 

just wondering how you and cabonanzinib 

mare getting on ?

hi there 

my husband was on Cabo for 24 months without any progression but the latest scan had shown that one of the nodules on his lungs have grown from 10mm to 32 mm so significant change. They've decided to switch him to Nivolumab now and i would like to know more about side effects/results etc. Some of the side effects sound rather scary (life threatening) so i would like to hear about your experience. how did your partner feel on Nivo in general? did he have any serious problems with the treatment?

thank you!

Hi Haga,

 I was on Nivo for kidney and lung cancer, it worked on my lungs but not the kidney, that’s when they changed me from Nivo to Cabo the other way round, it seems I got the same side affects as the nivo I know I have been very lucky with both treatments I hope that helps you with your concerns 

Hi Lisa,

I’ve been on Cabo for 8 months now and have had some good results - slow but steady shrinkage.

I hope you have that the treatment goes well for your partner.