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. 

Hi Ttmaesro, I have just found your thread, and wondered how you are getting on, and if you had any tips on coping with the side effects. I am on the same treatment as you, (incurable but manageable stage 4 kidney cancer) and my side effects mirror yours.

Sore feet, using udderly smooth and dermol, nasal congestion overnight, but recently started bleeding gums overnight, did you find anything to help that. I am trying corsydol toothpaste and mouthwash, is there anything else you found to help

You are 5 months ahead of me and I wish and hope all is going well with you, good luck

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Hi TTmaestro, thanks for replying and I hope you treatment is proving positive and you are feeling as well as can be expected whilst on treatment.

I have now had 6 infusions and suffering badly from a very sore tongue and roof of my mouth  and gums that bleed at night, when my mouth is very dry ) using mouthwash ), also now having painful hard lumps of dry  skin on my feet and heels, moisturising with dermol and udderly cream .

 Have you by any chance found anything that has helped you with your side effects that may help me.

Thanks T13

You need to go to a podiatrist and they will get rid of the dead skin on your feet that turn into corns and are very painful. I went private, paid £50 for an hour appointment at a local clinic and it was the best £50 quid I've ever spent. I was limping heavily when I went in and practically danced out. Then use CCS Cracked Heel Repair Cream (about £12 on Amazon) to maintain your feet. 

With the gums bleeding, the only thing that works is drinking lots of water all day and having water by my bed at night, as soon as my mouth dries out it bleeds. Also I brush my teeth with an electric toothbrush rather than a normal one.

With Nivolumab, you might start to get really bad congrestion that builds up overnight and can be grim first thing in the morning, lots of blood and mucus. I just try and ignore it. During the day it isn't too bad. I use the Udderly Smooth cream that I found useless on my feet to coat the inside of my nose to stop it cracking, also around my earlobes!

On the positive side, the Cabo/Nivo treatment is melting my secondary tumours very effectively! Huge difference when I got my 6/9/12 month scans.