My mum is struggling to eat - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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My mum is struggling to eat

R60NDA
R60NDA

Hello, I’ve just joined the forum. My mum was diagnosed with Stage 4 lung cancer in December 2019. Life since then has been a rollercoaster of emotions. She started chemo in February and was told she would have 4-6 cycles. She has had different side effects. Firstly the lower part of her legs ballooned from the steroids that she was taking prior to the chemo. The chemo at each cycle has given her mouth thrush, meaning that her mouth is sore and she can’t eat. She barely has an appetite. When she started treatment she was around 10.5 stone she now weighs less than 7 st. She’s had 3 cycles of chemo and she’s not having anymore I don’t think she could take it. She’s struggling with the metallic taste in the mouth and this is really causing her problems with not eating. I’m worried that she’s going to end up in hospital. Whatever we suggest she doesn’t want it. I just don’t know what to do. She has the supplement drinks but struggles with them. She also has a lot of mucus, is this normal? She says this affects her. I think she’s depressed I don’t know what I can say or do to make her feel better. She’s 70. I would love some advice regarding her serious lack of appetite and if there’s anything that can be done about the mucus please.

Thank you

18 Replies
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RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear R60NDA

Welcome to the forum and so sorry to hear about your Mum and how difficult this must be for you all.

The metallic taste is a common side effect of some chemotherapy and this link from cancer research UK provides some useful tips on how to aid this in your Mum's diet:

cancerresearchuk.org/about-...

You may know this already, but things like not using metal cutlery, sipping a fresh (not tinned) pineapple and ginger nut biscuits may help.

You may find this information from 'Very well health' of use on managing metallic taste:

verywellhealth.com/metallic...

There is a large section on this from Macmillan support and how to assist with poor appetite:macmillan.org.uk/cancer-inf...

Some chemotherapy can cause sore mouths, thrush and mucous as a result.

Has your Mum's mucous been assessed, as in colour etc and is she able to spit it out okay? This will obviously be having an effect on her and her taste buds. It is very distressing to see our loved ones not eat and lose weight quickly, very small and frequent diet is advised. It sounds like your Mum is struggling with the supplemental drinks which can be quite thick.

If you feel that things are getting worse, it would be advisable to ask your GP for a home visit or if you have the contact details of the Macmillan nurse to call them to have your Mum re assessed.

We are offering a new service, called 'Keep in touch' to provide support for those in isolation, where one of our dedicated team members contact your Mum once a week by phone or email to be there as a contact. If you or your Mum would like to register for this service, details can be found on this link:

roycastle.org/covid-19/info...

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Thank you so much for your message. I had a chat with my step dad (he’s living with prostate cancer) and suggested that he rings the palliative nurse who we’ve had contact with at Cynthia spencer hospice. She has been so good and see if she will come out. Problem is my mum paints a picture to everyone that she’s ok and eating and not down, but this isn’t the case. My step dad has had a conversation with mum this afternoon and mum has agreed to try and eat and drink more. It’s the cisplatin that just floors her. I don’t know if there’s also a mental block now with eating, she keeps talking about food, but whenever we suggest anything she doesn’t want it.

Many thanks

R

Cisplatin made my moth rare like metal. Between meals lemon drops or ginger helped. I ate with plastic forks and spoons.

There are special mouthwashes she can ask for that help relieve the thrush. Here in the US it’s called magic mouthwash, I’m sure you have something similar.

When my throat was at its worst from chemotherapy and radiation I ate lots of ice cream, applesauce, tapioca pudding, buttered noodles or rice. Honey helps to coat and heal as well.

You’ve got lots of great resources with the info the support team have given you.

Forgot to add there are appetite stimulants available by prescription. If your mom isn’t on anti depressants she would benefit. They were created for patients like us and she doesn’t have to stay on them for long.

R60NDA
R60NDA
in reply to Denzie

Hello Denzie, thank you for replying. That’s an idea I might get her some lemon drops tomorrow. Thing is she’s so stubborn and I’m so worried that the not eating will make her so I’ll. as you know you have been their with the treatment and the after effects.

Have you suffered with mucus at all?

Denzie
Denzie
in reply to R60NDA

Chemo stopped my mucous problem. I know other people continued to have trouble and I’m trying to remember what they used. Talk to her doctor about GERD. That could be a major trigger.

Hello R6. Sorry to hear about your Mum. I am just a little older than her with same prognosis and had similar problems. Cisplatin has platinum in it, hence the metallic taste. I could only eat fortified drinks etc for about 5 days but after that it improved and I the terrible taste went away.

Also had thrush but found the Nystan I was given was useless so I tried bicarbonate of soda mixed with water. Buy it nowhere and is v cheap! Also remember to put yr toothbrush in the solution after otherwise it stays on the brush!

I have stopped chemo and moved onto immunotherapy which has far fewer side effects.

Keep a positive mind!

D

R60NDA
R60NDA
in reply to DMR1

Hello D

Mums mouth thrush has gone thank goodness and her mouth is feeling better. It’s just the taste but hopefully as you say in time it will improve. Mum will be going into the immunotherapy hopefully next week I think.

All the best D

Hello there,

My mum has almost identical problem to yours - only she has had radiotherapy too and I cannot get her to eat.

She mucus and metallic taste and just doesn’t want to eat anything. She’s lost 5 stone now.

She has stage 4 SCLC and very down. She’s 72.

I feel empathise with what you’re going through.

Doctors say it’s normal post the treatment, but also feel so helpless.

I really hope they both pick up soon.

Much love

R60NDA
R60NDA
in reply to Emkins

Hello Emkins, it’s just so sad isn’t it to see and watch them, as you say feel so helpless. I’ve just been to the supermarket and brought her some lemon sherbets and also some indian savoury rice snacks something with a bit of spice that she can nibble on. I dare say that when she gets them so won’t want them but it’s worth a try. 5 stone is a lot isn’t it? It’s going to be a long journey for them both but fingers crossed that they both begin to have more better days than lots.

Sending a hug

Emkins
Emkins
in reply to R60NDA

Thanks for your supply and I hope your mum loved the snacks you got her. My mum like pineapple at the moment and Butterkist popcorn! I guess it is better than nothing.

Let’s hope they both improve with baby steps.

Here if you ever need a chat xx

R60NDA
R60NDA
in reply to Emkins

Hello Emkins, I took a load of food over to them both yesterday and I took the snacks over, but no she didn’t like them. She did however have some cake I had made Raspberry and coconut. My stepdad said that he is getting her up to walk but she can only manage from the bed to the door, which is nothing but for her will be a lot.

She’s not having treatment again this week she says she’s not well enough, but knows she has to have it next week. She’s going to be on pemextred and pembrulisamab? Not sure if I’ve spelt that right and she’s really worried that this will still give her awful side affects as she will be on this for the next 2 years or so.

Likewise Emkins with the chat xx

Morning,

My sister had the same symtoms as your mum.

Metallic taste in mouth, thrush, no appetite etc. Excess mucous was very distressing I can only say it all passes but takes time.

My sister found lavender oil helped and eating or drinking little and often. She drank small sips over a period of hours using a straw. She ate very soft food - very very little but - often. Baby food she said!! Everything had no taste. Do not fuss or push her - very difficult especially as you are worried otherwise sooner or later you will get an explosion!!

That is normal.

You are not alone many of us have been and are still going through this - worse for them though.

Chin up/

Hi Molly - yes we’ve had the explosion already regarding the eating and so are now trying not to make such a big thing but it’s hard. Mum is drinking probably not as much as she should on some days. Thing is she knows all of this but I don’t know, it’s like she’s not helping herself and I know it’s easy for me to this, but I really want her to fight to start feeling a bit better.

Thank you

Hi r60nda

I have recently finished 4 cycles of cistplatin. I found I had the excess mucus and used chlorhexidine mouth wash 3 times a day when this was bad and twice a day at other times (although this has ruined my teeth). I could only face cornflakes and ribena when I was bad and things like waffles and chicken Kiev when I was feeling better. It was the sort of food a wouldn’t normally eat. Hope you find something your mum will eat soon.

Vickie

R60NDA
R60NDA
in reply to Vick78

Hello Vickie

Bless you, how are you feeling now? Are you going onto immunotherapy?

I’ll ask mum if she’s got that mouthwash, I’m sure she has but don’t know if she’s using it.

Take care R

Hi R60nda

I started radiotherapy last week and have now had 7/20 sessions. Fingers crossed this will work, the cistplatin made me very sick and it took me a while to recover. My lung cancer was stage 2a and they removed the lobe but it was left in 1 lymph node they couldn’t get to and this is what they are now trying to treat. Fingers crossed it works.

Vickie

R60NDA
R60NDA
in reply to Vick78

Hello Vickie

Well I shall keep everything crossed for you 😊 with your treatment.

I’ve also just spoken to my mum and she is having a better day 😊 and has eaten a bit more. I guess it’s a case of having more better days than not 😊

Take care R

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