Cabometyx woes

Hello Linda (LindaJZcba52a) 

I am Brian one of the Community Champions here on the Online Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and i hope seen and answered by other members of the Kidney cancer group.

I do wish you and your husband well and hope you find the information you are looking for.

Best wishes - Brian.

Hi

I started cab in July. Managed 2 weeks on 6omg ended up in hospital with an infection. 2 weeks later back in with anither mysteriousn infection for a couple of days. Reduced to 40mg all going tickety boo with the exception of sore mouth and tender feet. 7 weeks later temp spikes, 11 nightsbin hospital with neutropenua no sign of infection. 3 days out if hospital for another 24 hours with a temp spike.

Now on dexa to control temp spikes and back on 40mg cabo. So far so good.

Is the pain joint pain? 2 x paracetamol and a codeine works and you top up with a codeine just before the next lot of paracetamolvand single codeine is due. This works better than co-codamol as you can seperate the 2 drugs. Talk to oncology.

Buy some metatarsal pads from amazon. Not sexy but they work. You can also buy pads for whole foot.

Lots if udderly smooth foot cream. Not with urea as this takes skin off feet. Slather on in the morning and at night. Sleep wirh socks on. Swedish CCS cream is also good 

If its hand foot syndrome you nay need steroids. Chat to oncology.

Good luck and hope this helps.

Lissa x

Thank you so, Lissa! Sounds like you’ve been on quite the roller coaster ride w/Cabo, really hope things settle down!

His Oncology team is very hands off, no palliative care is available. Because of advanced kidney disease, he’s very limited medication wise, but will head over to Amazon pronto, thanks for suggestions!

Wishing you well & much luck,

Linda

Hi

I'm not sure if your GP can support, but if not you can ask for an early referral to your local hospice to support with pain management. They are another tool in your armoury too.

I have one and they are as hands on hands off as you want them to be.

Lissa x

That’s a great idea, GP is fairly responsive. Thanks!

Im just thinking through what I have in place to support me. Cabo is second line for me. I had a good 3 years with pembro and lenvatinib x