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Hi just a little run down on myself.

IN 2014 I had a radical nephrectomy of my right kidney. All clear for me for 5 years 1month!! and then I developed a solitary metastases on my chest wall and had a lumpectomy

After my last scan I was told it had spread to my pancreas and abdomen wall (all small lesions) thank goodness! I was started on suninitib but had to come off after only1 cycle due to an unbearable sore mouth that stopped me eating and as a result I lost a lot of weight.

I am now on day 3 of cabozantinib and hoping I don't suffer the same problem. so far I feel OK but it is early days. I just want to meet people who understand and can relate. Anybody else on Cabozantinib? Sending love everyone's way x

Divine Ms M over 3 years ago

Not on that but chemo certainly messed with my mouth. The hospital gave me a brilliant two part mouth thing-a wash and then a jelly which really helped. Sorry cant remember what it was called

good luck

sylvia

Davethedog over 3 years ago

Hi Mamma C, I have been on Cabozantinib for about a month now, after the Axitinib stopped working for me albeit after 10 sessions. My oncologist started me on the max dose of 60mg, with the understanding that he could always reduce it to 40 or even 20.

For me I had issues with cramp, sore mouth and ultimately upset stomach. I’ve had a break from the treatment to help things settle down and I’m now back on 20mg with a view if increasing to 40mg in a weeks time. For the cramp I’m trying tonic water (as my amazing oncologist said, have a G&T but without the G!!!) I take my tablets during the middle of the night to ensure I ovoid food 3 hours either side, this may be OTT but I’ve had no issues with upset stomachs. Where I did go wrong was to treat my sore mouth when it got bad, I should have maintained a daily routine of using Benzydamine Hydrochloride Mouthwash.

I ovoid anything spicy, pepperoni pizza felt like the hottest curry you could imagine! A good tip is to use child’s toothpaste, as that was a lot easier on the tongue.

Good Luck

Graham

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