Having real problems with mouth thrush and blisters on my current Cabozantinib treatment.
tried Benzydamine mouth wash, capasol mouth wash, nystan aural solution and biotene. All have short term help but nothing yet found to give long term relief. Has anyone found anything that really helps with this problem. Tongue is awful and eating is so painful
Hi Rojan
That all sounds really painful and I wondered if you'd been able to speak to your hospital team about these side effects yet?
I'm not a member of this group, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to spot.
While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Gill ABD
Thanks for commenting.. sorry you had the same problem but good to know now resolved and that Cabo is working for you.
What is really strange about my current mouth issue is that it’s something I didn’t have problems with when I was last on Cabo , just over 3 years ago. Like you I started my original course on 60 mg which I coped with for about 3 weeks and then the old hand and foot syndrome kicked in. I have suffered with this side effect with all of the different treatments I’ve been on ( there’s been a few) over the years with the exception of Immunotherapy which I breezed through until it stopped working for me..
Once on 20mg the Cabo really did the business for me and I went for over a year with stable disease results from my scans. So with my Consultants agreement asked to come off treatment for a while to give my body a rest after 11 years of treatment of one sort or another . He agreed and happily even without Cabo I was getting stable disease results for 18 months.. that is until January this year when my disease started to progress again...... so back on the Cabo.
thats when the mouth problems started. I resumed treatment on 60mg and lasted 2 weeks before severe side effects kicked in. Low sodium levels and these terrible mouth ulcers and thrush. Consultant reduced my dosage down to 20 mg which solved the sodium levels but did nothing to help the mouth issue, in fact it was getting worse. Drinking and eating anything became unbearably painful. I really didn’t want to stop the Cabo because it was actually working against the disease as recent scan has shown slight reduction on a couple of my lung mets.
As previously noted all the mouth washes and gels proved ineffective, so I was getting really quite depressed that I would have to stop treatment..
Some good news 
Consultant has given me a course of Fluconazole. (It’s an anti fungal treatment) and miracle upon miracle my mouth is healing.
The plan from today is 3 weeks of Cabo but only every other day, continue with the Fluconazole at the same time and then back to daily dosage from then on in.
Fingers crossed this works. I’ll keep you posted.
