Cabo and Nivol

My view.  If you get few side effects, then it's likely to stay like that.  Although it may take 3 months for the side effects to manifest themselves.  But then, an option is to stop or change treatment to manage everything appropriately.    If after 3 months, everything going well, then your body has probably adjusted to it, and all good until the decision is made to stop.  

I'm not sure I'm with you associating "progression" with immunotherapy side effects.  I don't think it's like that - but some therapies are, I believe, like RT and some chemos.  

I view cabozantinib on a different level to many other immunotherapies.  Not as universally well tolerated as nivolumab.  Where did I get that view from - I'm not sure!  Reading here perhaps, more frequently used as a 2nd line treatment than a first? 

Now let me declare my interests - I've not been on cabo, but have been on nivo and it worked well for me.

I'm taking both Cabozantinib 40mg daily and Nivolumab via infusion every 4 weeks, into my 8th month of treatment.

It is quite hard to separate which side effects are attributable to the two drugs. 

Cabozantinib has turned my hair into a strange greyish-blue colour which happened 6-12 weeks in. I've got really sore patches of hard skin on my feet, which I'm treating with 'Udderly Smooth' cream (!!!) and also my hands, eyelids and other soft tissues 'flare up' with an eczema like redness and soreness regularly. Pretty sure that is the 'nib.

Nivolumab gives me nasal congestion which is worst overnight, then every morning after I have had a hot drink or breakfast it 'melts' and I get a runny nose and when I blow my nose to clear it there is blood in the mucus. Also my gums bleed at night, especially when my mouth is dry (which is all the time). 

I've got creeping fatigue which is slowly but surely getting worse, that could be from either drug. I need 9-10 hours sleep a night or I feel crap. There's probably other things I've forgotten. All manageable though, no matter how frustrating.