Cabozantinib

Hi

I don't have the experience you're looking for but noticed that your post hadn't had any responses yet.

If you haven't already tried this I found a few references to this drug when I typed 'cabozantinib' into the search bar in this group. You could have a read of these threads and respond to any where you think the poster might be able to give you more information.

x

Hi  in case  you still need info on Cabozantinib, see link

www.macmillan.org.uk/.../cabozantinib

Hi Elliec,I've been on cabozantinib for about a year and the side effects are not that bad,like other people I have found that a sore mouth/tongue is the most annoying.I say sore but to be honest it is only sore if you don't adapt to the situation,let your hot drinks cool down more than usual, don't drink very cold or fizzy drinks,avoid foods that are hot or spicy, very crunchy or acidic,you will adapt I'm sure.Cleaning your teeth is an issue,use Difflam mouthwash, kids toothpaste and the softest toothbrush you can find, you will work out what you can drink or eat,but honestly it is not that bad a treatment,take care,hope this helps.

Hiya... Thanks for your reply. I've been taking Cabo for two weeks and I'm not getting any side effects whatsoever. When did your side effects start?Thanks

Hi Ellie C, they do take a while to kick in ,2-3 weeks but they are not that bad, if you do experience problems my consultant put me on alternative days of 40mg one night 20mg the next, don’t worry the mouth issue is just a case of adjusting what you eat, just move away from anything you find hurts your heightened sensitivity.take care.

Hi Elliec,

I hope you are doing OK.  I was interested to see how you are  getting in with the Cabozantinib. My dad started taking it about 6 weeks  ago after a scan showed pazopanib had not worked and his cancer has spread.

So far he has lost a lot if weight, has no energy at all but I think the worst side effects are  Diarrhea and his complete loss of taste, he is finding it hard to find anything at all to eat that he can taste and to top it all off he has no appetite so it's hard for him to want to enjoy food at all.

I just wondered if you have suffered any side effects and if you have any advice

Many thanks

Hi 

I recognize the lack of appetite n loss of taste as I get the same with my Pazopanib.. But I get round these 2 effects by having  regular breaks. In fact my oncologist has said I can have 3 weeks on n 1week off if I want to. Not tried that yet.

The diarrhoea I use Loperamide as n when, having got a stock of them from the hospital/ GPs.

Try the opposite of a slimming diet re food, eg cream on soup, high fat puddings, rice pudding - anything really your dad fancies n that's high in calories. Failing that, have you tried the " ask an expert" group, so a a dietitian can answer? Or ring up the helpline on 0808 808 0000 8am to 8pm.

Hiya. I'm doing ok on the Cabo... I've been on it, now, since the 13th March. Side effects ain't too bad. They're actually similar to the Pazopanib. Diarrhoea being the worse one although nothing to how I was with Paz. I had to get the dose reduced on Paz. So far with the Cabo I'm still on the highest dose. I'm suffering from fatigue, to the point of being exhausted. I'm also getting acne. I've been taking imodium and also codeine for the diarrhoea as and when needed. All in all I'm managing OK. I was really worried about starting it, as I has heard so much about it, but in all honesty, I'm doing ok. Thanks for asking about me. I hope your dad copes OK with the side effects and is like me and doesn't get too many. Anything else you need to know, or is bothering you, don't hesitate to ask me. Take care x