Cabozantinib & Nivolumab

Hi, I’ve had a similar experience with Lenvatinib. When I first started taking it my blood pressure went sky high, started blood pressure tablets which got things back to normal and re started treatment, all within a two week period.  Hope this helps to put your mind at ease.

Ah thanks for the feedback

Hi - I was on ipilimumab and nivolumab.  Reactions to the drugs at the start is quite common.  I had to stop after 3 months due to too much inflamation in the kidney.  After a course of steroids I was able to restart with nivolumab only at a lower dose and every 2 weeks instead of 4.   Then we upped it to the standard dose and timeframe.  There are loads of alternatives with immunotherapy, I believe.  If this one hadn't worked, or I wasn;t able to tolerate it, we would have tried something else, another immunotherapy.  I think cabo is also one of the harsher ones?   

I've been taking Cabozantinib (40mg) daily and getting 4 weekly infusions of Nivolumab since May 2024 for stage 4 kidney cancer (renal clear cell carcinoma) - same as you I'm due to have 2 years treatment.

The Cabozantinib started to give me sore feet after about 3 months of treatment, and also sore soft tissue (almost like eczema) on my hands (in between fingers) and on my face around the joins of the nose, ear, eyelid etc. For the hands and feet, my oncologist recommended this cream, which I got from Amazon:-

https://udderlysmooth.co.uk/reviews

On the face, the oncology nurse prescribed Eucerin Urea Repair cream, which works well.

The pads of my feet are still sore but bearable, I managed to play table tennis for 6 hours yesterday in only moderate pain!

My liver ALT level spiked (up to 185) from the Cabo so I had to stop treatment for a couple of weeks in August, but it levelled and now sits between 65-80. My blood pressure has crept up but is stable at 130/90 ish.

The good news is I've had shrinkage on my secondary tumours and positive progress on my primary too.

You might also develop nasal congestion from the Nivolumab which gets worse over time and also causes nosebleeds.

But it is all manageable, if annoying. Grit it out! Stay positive.

Aw thanks for your feedback

Aw thanks for sharing , great to hear that it’s giving you the right outcome.