cabozantinib

Hello there

i have been on Cabozantanib as my first line of treatment since July 21 and on Cabozantanib 20mg since July 2022.

you will find more info if you click on my profile.

 I have  experienced a little bit of tiredness and sore feet which are now Treated by a chiropodist.But everyone reacts differently don’t they.

have had the occasional break but feel 20mg must not be so toxic for me.

good luck with this new treatment 

gill x

Hi Gill,

thanks so much for your response. I think that I was in danger of falling into a mindset that cabozantinib may be my last straw but the fact that it was used as your starter drug makes me much more optimistic

really hope that it keeps working well  and you stay well for a long longtime  

Simon x

Good day to you.

I also have Stage 4 kidney cancer that has spread to my lungs (a few spots that shouldn't be there was the comment) and lymph nodes in my lungs.

Started on Ipilimumab & Nivolumab in January this year. Was supposed to have 4 sessions but got a bad reaction so the sessions were getting postponed until it was sorted. I had a severe skin reaction (rash & itching) that took weeks to get under control.

Doc said they were "happy" that they had seen the reaction as it showed the treatment was working & to not worry about the missed sessions as the drugs can stay in your system for up to 2 years. Had CT scan couple of wks ago & have appointment tomorrow (Thu 24th) when I will probably get the results plus 3 sessions of treatment have been booked for next 3 months.

I can't say I don't have any fears re the scan results. In fact I would say I am dreading this appointment tomorrow.

All I can say is that we all have to keep fighting & look forward to tomorrow whatever it brings.

Take care all

Hiya sweety...I have stage 4 and in my lungs too...mine isn't curable but manageable I have been told.

The best thing I did was join the forum for the living with incurable.

Most have gone on for years with treatment very up beat lot they are and very supportive....

Sorry I would like to offer more support but I am so very tired today

Hugest hugs

Evening Fleabane...

That was one thing I forgot to mention is that mine is also incurable, ah well.

I don't do the messageboards that often so that means I wasn't aware of an "incurable forum" so will look that up.

Don't apologise, even though our nearest & dearest offer marvellous support, it's only those who are suffering know what we are truly going through.

Hope you are ok and the hugest of hugs back to you 

I've been on cabozantinib for one year now.  I also have stage lV kidney cancer, but it has spread to my brain.  And I was on the same immunotherapy drugs beforehand.  The good news is that cabozantinib had a great effect. My brain tumour reduced in size considerably after three months.  Since then, it has remained about the same.  Back in February my dose was increased from 40mg to 60mg, I will find out the effects next week.

Sorry, I meant to answer your question about side effects.  I feel tired, but I can still walk 4 or 5km.  I suffered a lot of indigestion initially, but omeprazole cured that.  I get bleeding gums, but a mouthwash keeps that under control.  Biggest issue for me is diarrhea, Ive lost weight whilst on cabozantinib. And there are certain foods that really set it off.  No more rare steak for me.

Summary for me, I can cope with the side effects.  It seems to work.

Hi SandyN

thanks for the input, it sounds like a positive move to cabozantinib. Hope that I get the same results. Good luck for next week and hope it goes really well!!  

 Hi MisterD  The incurables forum is here  Living with incurable cancer forum - patients only  

See you there, soon!

My experience might be of some interest. I also have incurable stage iv kidney cancer which had spread to lung and brain. I had a craniotomy followed by six sessions of stereotactic radiotherapy. I am now on a 13 session course of immunotherapy - cabozantinib 40/daily and nivolumab/every four weeks. Four sessions so far. Results of latest CT scan and MRI tomorrow. Side effects have been mainly diarrhoea/ sore tummy and itchy skin as well as tiredness. I am hoping for some positive news tomorrow but we will see. Take care.