DM barely eating and drinking while having chemo

[UnBledPerdu]

DM is currently having chemotherapy and is finding it impossible to drink more than about a small cup of liquid each day and will only eat a few small bites of food.

Doctors just keep telling her that she needs to drink more but I don't think they realise how difficult she's finding it.

It almost seems like it might be a mental block rather than a physical thing.

My siblings and I are beside ourselves. Nothing we try is working and it's like we're just watching her waste away in front of us.

Posting on here in desperation in case anyone has any suggestions.

I found it painful eating and drinking on chemo, could that be it? I literally could feel everything going down some days. The doctor gave me some tablets for indigestion which helped, and I used to take paracetamol before eating on really bad days. I don't really have any advice if it is mental though - I would force myself to eat and drink because I knew it would make me weaker if I didn't. Hope your mum finds something that helps xx

Thanks so much for your reply. I'm really sorry you went through that💐

If you don't mind me asking, did you still feel thirsty? She is saying that she isn't thirsty but we don't understand how this can be the case when she's having so little fluid.

Would she prefer nutrition shakes? They’re pretty calorie and nutrient dense.

@UnBledPerdu I don't remember feeling particularly thirsty, no, but then like I say I did force myself to drink even when it made me feel sick. It does strange things to your body so I can believe she isn't feeling thirsty.

I used to have lucozade sport in the fridge, that might help? And I had lemon barley water, that helped because water tasted funny and it also helped with the discomfort when going for a wee. Could you ask the oncology nurses when she is in for chemo? They were always really helpful to me.

Hope you manage to find something to help her, it's a rubbish time without the extra worry.

Sorry to read this. My mum was the same and would barely eat. Does she feel sick and would anti sickness meds help? Is there any high calorie food she would try? Mum could sometimes stomach mango ice cream. Or would the nutrition drinks the oncology wards have help at all?

My dad was the same.

nausea was a big problem.

you can buy shakes that are meal in a drink. NHS might prescribe them possibly?

he did lose a lot of weight through chemo.

if it is nausea there are drugs that will help

Sympathy as we've been here with a family member. Would they get on better with hot drinks? Have they been checked for mouth ulcers/oral thrush?

She tried these after she had surgery a few years ago but unfortunately she hated them so wouldn't have them.

Thanks @SunnyValemin. I'm not sure how she feels about lucozade and lemon barley water but I will suggest them 🤞

@UnBledPerdu How old is she and what’s her diagnosis? Is it curative or palliative chemo?

@UnBledPerdu

There are lots of different chemos. I was on EC and Pax and Carbo. I was told I had to drink 2 litres a day to flush it through as it's so toxic.

I don't want to scare you but do you have a McMillan nurse or chemo number you can use to discuss this?

@UnBledPerdu

Also it's awful watching/ supporting someone you love through chemo. I hope you are ok.

She's on anti-sickness meds but I don't know if she maybe needs a higher dose. She won't even eat chocolate at the moment (previously unheard of) - the most she is managing is a bite or two of toast.

Sorry about your Dad 💐

Unfortunately she can't bring herself to have even the tiniest sips of one of those meal replacement drinks. All she will have at the moment drinks-wise is tea and squash, and she's even going off tea now 😟

Have you tried ice lollies - you can make the fortified drinks into them too.

Or ice cream. Drinks which are cold are often helpful, trying different temperatures. Also things like soup, yoghurt? Try different textures too as some may be better tolerated than others. I agree with check mouth ulcers or thrush and remember it may be further down than you can see.

She's in her early 60s. It's stage 4 pancreatic cancer but slow-growing so the hope was that this chemo would slow things down and give her more years.

Could she try those sweets aimed primarily at people with dementia who forget to drink? I think they are called jelly drops or jelly dots.

My friend could only manage icelollies when chemo was at it's toughest. Everything tasted horrible but she had lollies made with a juice or squash and they helped hydrate her. One of my mum's friends suddenly developed a taste for coca cola having never liked sweet fizzy drinks, all due to the changes in her taste buds. Might be worth trying tastes of other things (although it sounds like you probably have).

Much sympathy for you all - horrible for her and for you supporting her.

@UnBledPerdu sadly, she might be turning her face to the wall. she knows that stage 4 pancreatic is not good. mcmillan or hospice might be the best way to go. at least in hospice they can give her iv fluids..

Yes this is why we're all so worried 😟

We've asked if she can be given fluids intravenously but they don't seem willing to do this unless she turns up the hospital severely dehydrated.

Can she physically manage drinking, even though she doesn't want to? If so, what about home made shakes made with plain or sparkling water and frozen fruit (if she's lost the taste for sugar - chemo often makes people crace salty rather than sweet flavours), or milkshakes made with ice cream and full fat milk? Or ice creams / frozen ice lollies / ice cubes made from fruit juice or whatever else she likes the taste of?

In terms of food, perhaps things that may be easier to swallow, like plain rice or mashed potato made with butter, cream and full fat milk? (If she can't manage much, it's important to make sure what she is having has as many calories in it as possible.)

We never tried these, but I read about them on a similar thread:

https://www.jellydrops.com/

She does have sores in her mouth now but she was already off food and drink before they developed (but I'm sure they're not helping). She was drinking tea but is going off that as well now. She can't have cold drinks as they cause throat spasms so will now only have room temperature squash (albeit only a few sips over the course of a day 😟).

I've just finished chemo and I now realise I wasn't drinking enough. I didn't feel thirst in the same way, and it hurt to eat and drink. I was plagued with oral thrush and this was a big part of the problem. Ice lollies were about the only thing I could manage, as these also soothed my sore mouth and throat. I also sucked on ice cubes.

Ex hospice worker here…is she in contact with hospice already? Hospice isn’t just for end of life, it’s for support and symptom control as well and many hospices have community teams to visit people at home ,or offer day services so people can get support from others in the same boat. Sometimes people need emotional and spiritual support to decide what is best for them and may choose to stop life extending treatments because, for them, the side effects are more impactful than the benefits. The chemo team should advise on alternative ways to get fluids in , ice lollies can be great for sore mouths….but if you are feeling it’s more her emotional / mental state that’s stopping her eating, then she needs a different type of support.

During chemo everything including water can taste different and horrible - I had a vile taste in my mouth all the time which only fizzy drinks could alleviate. Never liked them before or after! Try those maybe.
Also anti sickness medications don't always stop you feeling sick, just stop you being sick and can cause awful constipation. That doesn't help with eating either.
Can't suggest anything beyond what's already been mentioned, but just to help understand what might be happening.
All best wishes and support to you...