Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Struggling to eat and drink on Pazopanib

Letsbeatthis
Posted by

HI,

My dad is struggling to eat and drink on Pazopanib, wondering how alarmed we should be about this? Did o hear you can get shakes to keep nutrition up?

Thanks

buttercup01
Posted by

Hi ,

Yes you can be prescribed shakes and juice drinks too.

Will check what they're called and post again with details.

Meanwhile, what dosage of Pazopanib is he on?

Many of us are on 600mg/ day, having found we couldn't tolerate 800mg. Your dad may need to take an anti - sickness tablet regularly at the same time as his Pazopanib.

What reason is he struggling- because everything tastes like cardboard/ his taste buds are up  the creek or because he's got a sore mouth?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

The drinks are Ensure Plus milkshakes and Ensure Plus juice.

You can buy them online in various flavours.

Might be worth getting your dad's oncologist or GP to prescribe them - if he gets free prescriptions.

If he has to pay then ,may be cheaper to buy online!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

hiya - I'd echo everything buttercup has said - I'm on 600, started on 400 went up to 600 then 800 - couldn't tolerate it and went back down to 600mg.

I have days where the nausea is everything. I'm on my 4th different anti-sickness. I have metoclopramide and it's been the best so far. If he's on anti nausea and they're not working ask for an alternative - there's a huge choice.

Reduced appetite is a side effect, so even once he starts eating again it may not be at the level he's been used to.

The bottom line is you should be able to eat and definitely drink, even if it's less than prior to treatment and even if you have nausea / sickness / diarrhea.

If you can't at all, then a reduction in dose might be in order.

Jo
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Gragon
Posted by

Hi ,

I would agree with everything that has been said so far but just have a couple of things to add.  Many years ago my dad was prescribed the build up drinks and hated them as they were really sweet.  Then he realised that he could slip a shot or two of alcohol into them and turn them into cocktails.  It was easier to get him to drink them after that.  He particularly liked the chocolate one with rum in it and would drink them on a night whilst watching tv.

I struggled for a while with nausea and did not feel like eating but funnily enough I eventually found that the answer was eating!  I could not face a full meal but realised that if I nibbled on a couple of biscuits or something similar the nausea went away.  I eventually started with small fruit like grapes as I realised I was eating so many biscuits and sweets through the day.  I then built up to a small meal and eventually my diet returned pretty much to normal.  I wouldn't worry too much about the quality of the food to start with, if you can find something he will eat then feed it to him.

All the best,

Gragon xx

buttercup01
Posted by

Hi  I forgot about the Buildup drinks. They do soup as well, don't they?

Re biscuits, ginger ones are good for nausea

Try little pots of rice pudding, jelly, yoghurts - anything to get some food down, as @gragon says

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Mondeo
Posted by

All very familiar to myself, I too suffer from the same effects as regard’s to food. Having been on Pazopanib now for 6 months I’m once again struggling with food. I stopped taking my 600mg daily dose at the end of October just for a week to see if these awful side effects would go away and they did after a few days. Food tasted properly once again which was Heaven. I resumed taking the Pazopanib but gradually my sense of taste went downhill once again. At a recent appointment I told my Oncologist what I’de done and he said he would have told me to take a short break off the tablets anyway, so no harm done. I’m slowly learning to find foods I can eat but sadly for myself it’s only really sweet stuff that I can tolerate when I really want a good mixed diet as I always have had. Sweeter tasting canned soups like cream of tomato I find okay as well. I know I have to eat and being well overweight anyway I’ve been drinking “Slimcea” meal replacement shakes just for the nutritional value. It is so soul destroying being this way but you have to get on with it for the sake of your family as well as yourself. My poor wife who’s an Angel to me keeps trying everything to feed me properly buying all sorts of foodstuffs sadly of which a lot get wasted. The advice given by other past posters on here has helped me and I do hope it will help you too, good luck for the future.

buttercup01
Posted by

. I have regular breaks of about a week every 3 to 4 months- next one around Xmas.

Otherwise, it IS so soul- destroying

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

that's a priceless story I love it!

Sweet definitely seems to be a common factor for us all. I find melon a good place to start if I'm off food. Watermelon is good for a bit of extra fluid too. And  strawberry ice-cream has been one of my go to's.

As Gragon says managing to get a little down can actually help settle you. My nurse recommended more flavoursome foods, but I actually find the opposite. I find fresh tasting foods easier to tolerate, so mozzarella & tomato is a good one, a ham sandwich I can almost always manage and banana milk - so just a ripe banana blended in full fat milk.

I've literally just agreed with my oncologist that I'll have 4 months on 2 weeks off as I've had a very up and down stomach the whole three years I've been on it so far. Plus additional breaks if it suits - for example I've just come off a 2 week break and he said to have a  week off at Christmas if I fancied it. 

I find the benefits of a break last for much longer than the break itself. My previous break was at the end of March and I felt well until almost the end of June. To give you an idea, when I started treatment in 2016 I was 10st 10lbs and a large size 12 / small 14. My weight gradually dropped over time, but between September and March last year / start of this year I started to struggle and dropped to 8st 2lb. That triggered my March break. I ate everything in sight! Got back up to 9st 5lb. Gradually went back to 8st 10lb then another break and I'm now back at 9st 3lb. I like the idea of having a break to look forward to and I'm hoping that by having them at 4 months i'll still be feeling relatively well and I'll stop having the really horrible dips.

So you can see it can be a it of a rollercoaster and everyone finds a different way through it. It can be very much trial and error.

Lots of luck to you and your Dad.

Jo
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