Cabozantinib

Hello Joolie

how is your fiancé getting on with Cabozantanib? x

Thanks for your reply Cliff. I hope all goes well for you. My fiancé has been on Cabo for 2 months now. 40mg, slight loss of taste and sore feet so far. Scan end of June to see what they have done. Praying it’s slowed down or stopped. 

Good to see a reply . Loss of taste can last for weeks, how many days is he taking the Cabo for..?  My oncologist was happy for 21 days on and 7 days off. 
watch out for the muscle spazams , they come with no warning , mouth sores . 
BUT everyone’s different, NHS web page for side effects.  
He’s got to walk .. and any sign of blood in the urine, get to A&E. I left it for 24 hours , and ended up 16 days  in hospital. Not nice.

1. He takes it daily. He ended up in hospital for 7 days in feb as he had bladder retention. Lots of clots stuck. He was in so much pain. But that was before Cabo. He walks our dog every day so hopefully that will help. Thanks for the heads up 

Hi Gill, doing ok, he’s been on it for 2 months now. Pain in feet, dry skin, painful feet, loss of taste but all mild. Just prying scan results show something positive as immunotherapy did not work. How’s life with you? 

Hello Joolie

i have sore feet as had lots of corns but was much better after saw podiatrist. Go every 3 months or so now.

Has your fiancé tried a podiatrist?

I am good thanks.waiting for scan results due mid June (not looking forward to that horrible waiting room scanxiety!)

x

Hi Gill, how are you doing?  My fiance is now my husband, we got married on the 20th October and had an amazing day and honeymoon.  He has been on cabo for 7 months now.  2 scans ago they said the tumour had decreased slightly, and the last scan it had stayed the same, but the lesions on his lungs had shrunk, I don't know about his liver as he forgot to ask.  He has another scan on the 29th Nov.  He looks much thinner than he used to, has painful feet, sometimes tummy problems, and taste loss, but still manages to walk with me and our dog daily.  He is in good spirits mostly.  I have anxiety a lot as I am terrified of the outcome of all this.  Some days I've got a handle on it and some days it consumes me.  Julie

Hello Julie. congratulations on your wedding! 
Good your husband is out every day with you and your pooch. Scans seem to be going well for him too.

I am still on Cabo and I have a scan tomorrow with consultant mid Dec.

it is still mentally hard to deal with sometimes 3+ years on so can appreciate how you feel.

I Try to live in the moment but hard as I am a forward planner.

Let me know how your husband gets on following his next scan.

best wishes

Gill

Hi

I have been on it for a few months. I had a few side effects so the dose was cut from 60mg everyday to alternate days it helped with my appetite and tastes but after 3 months it showed a 2mm growth on my kidney. I'm now back upto 60mg everyday and hopefully it has stopped the growth. My oncologist said he had patients that had this treatment for between 7/14 years. Hope this helps and good luck.

Hi Gill,

how are you doing? We got the results of his last scan and he has 2 new deposits on his lungs and 2 new ones on his lymph nodes. They want to scan again in 6 weeks, but feel he is not responding to Cabo anymore. She said there are 2 more tablets to try.

His kidney tumour has stayed the same size as has his liver mets. 

Hope you have a lovely Christmas and you had better results x