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 ?????
Well after 6 days of not taking my Pazopanib my sense of taste has returned and although still not perfect I can eat normally once again with just a hint of that awful metallic taste especially when I drink water. The diarrhoea symptoms stopped after the first few days and I’ve generally felt so much better with so much more “get up and go” in me. I will re-start taken the Pazopanib tablets tonight with fingers and everything else crossed that I don’t get the return of the horrible side effects that I’de suffered from.
I’m glad you’ve had a break from your symptoms. Even just a bit of respite works wonders for the morale. Hope that the horrible side effects don’t come back.
Makes so much difference to just have a few days' respite from side effects. Touchwood, mine haven't kicked in yet- only been back on meds a week tho...
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Just an update on how I am with these side effects. I restarted taking the pazopanib at the beginning of the month and at yesterday’s consultation with my oncologist I told him what I’de done and he said it was okay to take a short break from the pazopanib. If needed on future occasions I can do the same after being on the drug for longer periods of time. I really enjoyed having my sense of taste back for the first week or so but over the last couple of days the metallic taste has returned with loss of taste too. I have’nt had any soreness and ulcers in my mouth as yet so fingers crossed on that one. I have had no return of the “runs” up to now either, I will persevere with the same dose as prescribed by my oncologist up until my next scan in 8 weeks time.
Well done Mondeo re getting some despite from the taste changes. With the " runs", are u prescribed Loperamide to take if need be? ( Similarto Immodium).
Btw, what dose r u on? - most of us seem to b on 600mg a day.
That's what I was on before my treatment break n was put back on the same dose a month ago. So far, my tastes buds have been slightly affected n I may have got a bit of "runs" but that could just b what cereal I have just now.
Good luck for your next scan
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
As mentioned in my original post yes I am on 600mg of pazopanib per day. I was prescribed Loperamide too but chose not to take it for other personal reasons.
