Cabozantinib - how long before people start having side effects?

In my experience the side effects of Pazopanib and Cabozantinib are very similar and dealt with in the same way. Diarrhoea = loperamide, sore hands/feet=skin cream (I get cow udder cream with added urea!) and any odd aches and pains=co-codemol

Thanks for replying brighteyes. I’ll keep the cow udder cream in mind. Didn’t have that recommended when my husband was on Pazopanib! 

Hi Ard2014,

 I have been on Cabozantinib for four weeks now, I find I have a very dry mouth and sometimes when I wake up in the morning my left eye is stuck, I also have very dry skin, the hospital gave a mouth wash, skin cream and sickness  and diarrhoea tablets, I am very lucky so far I have had a few dizzy and sickness spells, but not to bad, I only hope it stays like this.

Hi Sandra 55. Thank you for replying to my post.

It seems you and my husband have started Cabozantinib at about the same time. I’m pleased to hear your side effects aren’t too bad  and manageable at  the moment and I hope this continues for you. My husband is also doing OK so far. 

I was sorry to read in your profile that you are waiting to have the tumours on your remaining kidney sorted. My husband’s previous treatment -immunotherapy- was halted in the spring due to Coronavirus as his medical team felt the risks of being in the hospital and possibly contracting the virus were too great. Treatment was resumed when the numbers of cases at the hospital fell.

My husband has been looked after by his oncology team for 6 years and we have lots of experiences from his cancer journey to help us trust their judgement. That doesn’t mean we didn’t find that decision difficult and worrying.

 It must be so hard for the consultants as professionals not to be able to offer the care they were able to give in the past. Their hands are tied by the constraints placed on the health service by the impact of Coronavirus. When my husband had a brain tumour removed at the beginning of lockdown his neurosurgeon had to say that if anything went wrong in the operation it was highly unlikely that there would be an ICU bed for him due to Coronavirus. If my husband didn’t have the operation it would have only been a matter of weeks before he would have died and so there was no hesitation in taking that risk but we both felt for the neurosurgeon. When had he had to say that before in his career? 

These are such challenging times and to be in your situation at this time is so tough. My heart goes out to you. I’m sure your oncology team are closely monitoring you. Are you able to talk to your oncology nurse about  how worried  you are? 

Hi Ard2014,

Thank you for replying to me, I hope your husband is doing well, in the beginning when I had my first op to remove my left kidney, I knew that I had it in my right kidney, I was expecting to go into the John Radcliffe to have bench work, which entails removing the kidney having the bottom part of the kidney removed, than put back by a transparent team.

But when they looked at my next scan they told me that this would not be possible, the cancer had spread it was not contained anymore and had gone to my lungs and was growing to wards the middle of my kidney where it could go into my blood system.

 I was told by my consultant that there was nothing else he could do for me, so he sent me to an oncologist in Brighton hospital, this is where they started giving me my immune therapy.

As I said it worked on my lungs, but has not done anything for my kidney as the cancer was still growing, so I am keeping my fingers crossed that this works for my and gives me extra time.

Hi Sandra 55

Sorry to hear removal of  the tumours in your right kidney isn’t an option. I hope your current treatment gives you lots of extra time with minimal side effects. 

Hello

i’ve been taking Cabozantanib for almost 4 months now. Only 40mg, but last scan indicated that things had stabilized and one nodule had shrunk slightly. I have had some side effects such as a sore mouth, hands and feet. I also had a few bouts of diarrhea. Most of these gradually cleared up, but I remained very tired, but it was recently discovered that my thyroid was underactive. Thyroxine was prescribed and I feel much better.  
I hope the treatment works for your husband and that he can get some enjoyment fro life. At the moment, COVID permitting I am playing golf and taking other exercise such as long walks.

All the very best to you

Thank you for replying to my post Mjbea 1. I’m very pleased to hear you are out on the golf course and doing OK with minimal side effects. 

So far so good here. No major side effects have appeared and my husband’s pain has decreased so he can bend and move more easily which we are very grateful for. We are enjoying life within the constraints placed on us by the cancer and Covid, by watching travel programmes and using technology( old and new) to stay connected with family and friends. 

Keep  safe and may those tumours continue to shrink. 

Ard2014

1. I have been on it for 6 months, my hands were really bad to the point i became disabled but urine cream worked wonders. Foggy head with memory loss of words, bad ulcers in my mouth and now my throid is damaged. But i am grateful to be alive and it was on my second cycle things started to happened. My GP is wonderful

E45 shower cream worked wonders for me.