I had a radical nephrectomy of my right kidney in Aug 2017 and follow up scans proved positive until May this year. In June I had a recall to hospital when I was told that the renal cancer cells had now spread to the illium area of my pelvis and I was put on a Pazanomib dose of 800mg per day. At first all was good but then the sore mouth and metallic taste came on after a few weeks. It became hard to bare so at my next appointment the dose was reduced to 600mg per day. It seemed to improve these side effects for a while but now they’re back with a vengeance complete with “the runs”. It’s driving me mad and is now really suppressing my interest in food and everything else in general. I’ve tried the tips read on here and online like eating fresh pineapple etc but no relief, everything I put in my mouth tastes horrible even water, can anyone advise anything at all ?????
Hi Mondeo, sadly these sound like the typical side effects of Pazopanib. I was on it 2013 to 2016 n have just had to go back on. One way of,dealing with the " tastes like cardboard" as I put it is to ask if u can have regular breaks- eg about a week every 3 months in my case. I've already asked if I can do so at Xmas lol.
Has your oncologist given u a supply of Loperamide for the runs ?If not u,might want to get your GP to put them on repeat prescription.
So far, touchwood I've not experienced the sore mouth on 600mg/ day.
Has anyone else any suggestions?
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Oh, I remember this well. I was a pineapple eater! I also ate melon and strawberry ice cream when nothing else was palatable. My nurse also suggested an alcohol mouthwash - corsodyl.
I don't know why - but this cleared for me as a side effect once I'd had an actual proper break. I had a week off treatment - and the metallic taste just never came back. I was on 400mg at the time. I moved up to 600mg soon after and was still ok. As Buttercup01 says - a break could actually be the answer.
As for the runs - that's a definite one for me. It's not a exact science, but I find two loperamide every 3 to 4 days works reasonably well. Maybe TMI but I find that if I wait to take them until it's just starting again, I don't get backed up either. It's definitely a balancing act and you'll find what suits you over time. I know some people have been able to identify foods that trigger them in particular. I haven't really found foods, but alcohol is a definite one for me more's the pity.
i Had a two week treatment break last Christmas and the horrible sore tongue cleared up completely. I was dreading it coming back when I started on Pazopanib again but, wonder of wonders, it didn’t. I think a break can definitely reset the clock and help to make the side effects more manageable.
I'm hoping that'll happen to me over Xmas, Having been off the meds for over 3.5 years, don't know quite what to expect when indeed they'll kick in again. So far, so normal lol.
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
I’ve decide to stop taking my Pazopanib until my sense of taste hopefully returns as I can’t eat or drink anything other than very sweet things like boiled sweets and cordials. I have been on a 600mg dose per day since the end of July without a break. I’ll leave it for a maximum of 1 week before recommencing it, hopefully this may do the trick. I fully intend telling my Oncology team of my actions during my next appointment at the end of November.
Hi Mondeo, I hope the break helps you. When I started on Pazopanib, the oncology nurse told me that they know people take breaks and that the most important thing was to let the team know when they do it. I know it’s hard to come off the treatment even for a little while, especially if it’s working but you have to balance that with your quality of life. Let us know how you get on.
if you read my profile you will see that I am on a trial which means that I regularly take 12 week breaks from pazopanib. I am in the middle of one now and if all goes well I will restart it again in December.
It feels a bit surreal at first not to be taking medicine which you know can assist you but you do get used to it.
Generally after each break my side effects have reduced although some things (such as which foods trigger diarrhoea or excessive flatulence) change after each break.
This might amuse you. When I replied to Mondeo I tried using the dictation feature on my iPad. It transcribed Pazopanib as piss up in a pub. Now what would you rather have?
