Need advice regarding my mum who has stage 4 lung cancer

[Keely1984]

hello, my mum was diagnosed in February with stage 4 non small cell lung cancer. She has had 3 lots of chemo which have absolutely floored her, however, the chemo is working and the tumours are reducing. However, she has no appetite and has lots so much weight. Currently 37kg. She is in hospital for a lung infection and the antibiotics are not working. My question is has anybody else experiences this, how can we encourage her to eat. The hospital are useless and are not helping with her eating. My mum says she doesn’t want to die and wants to put weight on to continue chemo back t she just isn’t eating. We have tried build up drinks/juices and everything. Any advice welcome. Thanks in advance. Keely 😊

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Keely1984

Welcome to the forum and so very sorry to hear about your Mum. The hospital team should be able to refer your Mum to a dietician who can visit her on the ward.

Other people have found eating small and often can help, and your mums lung cancer nurse specialist can advise.

If it is nausea that is stopping your Mum from eating, then medication can help this, sometimes infection can suppress the appetite and hopefully once the antibiotics take effect this will improve.

As you are probably aware, high calorie snacks or drinks can help, sometimes drinking in between small snacks is better as drinking with snacks can fill you up.

You may find the following links from Cancer Research UK and Macmillan support on advice on eating with cancer and how to put weight on: cancerresearchuk.org/about-...

and

macmillan.org.uk/cancer-inf...

When your Mum is getting discharged, ask for a community based dietician, so she can continue that part of her care at home.

Hope you hear from others who have been through the same.

We have a range of support services, from one to one support to online support groups through zoom , if you or your Mum are interested in any of these you can register through this link: roycastle.org/help-and-supp...

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Take good care of yourself also, as it is an extremely stressful and tiring time for everyone involved.

Kind regards

The Roy Castle Support Team

[Keely1984 in reply to RoyCastleHelpline]

Hello, thank you for your response but all that has been done. I think she has got used to not eating so just isn’t eating.

The hospital and dieticians have been less than useless and are not doing anything to help or encourage the eating.

We take in all the foods she likes, high calorie and little things as well. She is prescribed the drinks as well but only drinks one maybe two a day but she should have four.

I am at a loss

[ginkgo in reply to Keely1984]

I lost a lot of weight and had no appetite as everything tasted so bad, but the NHS nutritionist prescribed Aymes Shakes in powder form, which you mix with milk. They still tasted bad (to me) but I found drinking them through a straw made them more palatable. They are really good and I put on quite a bit of weight thanks to those shakes. When everything tastes bad, or you have no appetite, a drink is much easier to get down than solids.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Keely1984]

So sorry to hear that, and no wonder you are at a loss. It may be that you ask for an appointment with the oncologist to discuss this further.

Sometimes with cancer, it can take awhile for weight to come back on, and steroids or other drugs can be used as an appetite stimulant, but obviously these are used with caution or may be contraindicated and not always advised.

It sounds like you have done everything that you can to assist your mum with eating and sorry to hear of your disappointment with the staff. Your mum would be entitled to a second opinion if that helps and this can be done either through the oncologist or GP.

Kind regards

The Roy Castle Support Team

[janeg4]

Sorry to hear about your mum but please stop slagging off the hospital ........

[Keely1984 in reply to janeg4]

Hello, I’m not slagging off the hospital. I am fully aware that the NHS do an amazing job and are under paid and under staffed.

However, when you see your mum wasting away and no real input from the hospital other than saying “she needs to eat” it’s not very helpful.

Again this is just my opinion on this particular issue. Not a general remark covering the NHS as a whole.

😊

[nlg1405]

Hi Keely1984, I cant offer too much advice except just keep trying and be ready to run out and grab anything she might suddenly fancy when she does! Ice poles/lollies/fruit smoothies often helped. I know these arent the best option and are not high in calories but something is better than nothing and might stimulate her appetite. My mum also only ate Farleys Rusks(!) for a while but milk isn't always great if you are not feeling well. Boiled sweets/chewing gum too just to help take away horrible tastes in the mouth. I hope you and your mum have some success soon x

[Keely1984 in reply to nlg1405]

Thank you 😊

[Palpman]

My wife's cancer treatment caused her to choke on food or get hiccups and she lost her appetite.Her oncologist gave her steroid tablets and she is eating like a lioness.

She now eats constantly without hiccups or choking. She reads menus in between eating.

[Nopinkforus in reply to Palpman]

Yes to the steroids!When I was first diagnosed I lost a ton of weight. They then put me on high dose steroids for three weeks and my appetite went through the roof.

Even though I tapered off the steroids weeks ago, the appetite remains. If anything, I am now in danger of piling too much weight on.

Its crazy.

The whole thing is a balancing act.

[Keely1984 in reply to Nopinkforus]

Hello, yeah she has steroids in the past and her appetite goes up loads but because they can’t work out if she has an infection or not they won’t give her any. Very frustrating as she has been there 4 weeks and not getting any better

[Red58]

Hi Keely it could be. Antibiotics suppress appetite try small spoons of yougurt even spoons of build up drink ensure very small bits of bananas plenty water even coupla spoons soup hopefully her appetite will start come back when she start feel better ❤️

[ArtHopeLove]

Hello Kelly,Firstly we’ll done to your mum for completing 3 sessions of chemo & tumours reducing - that really is so positive - such good news. I can understand your problem with loss of appetite as my husband is sick with morphine. Might seem silly but have you tried soups - purchased or otherwise - you could take them in a flask. I know with cancer advice generally food advice changes to pre-cancer days - saying that higher flavour with adding a little more herbs, pepper or salt or lemon juice. You know your mums taste & how much flavour she enjoys - maybe add a little more for her. I’m sure you’re doing a sterling job, more than you know & taking in little tempting treats too. Really hoping that at this stage maybe soups will help from home in addition to hospital food. Wishing both you & your mum continued success with her treatment. Kind regards Val X

[KT22]

Hi Kelly, I can wholeheartedly sympathise I had the same problem with the hospital my husband was in. It was during covid so no visitors! So I couldn’t take things in.When he was discharged I gave him tiny amounts of ice cream, mousse, sorbet, ice lolly & custard. He had the Aymes drinks at home too which I also spoon fed him.

Try speaking to PALS if you aren’t happy with the hospital care. Best wishes x

[Sutton5]

Tillys tablet any sort of crisps just junk food I’m losing weight had been in drinks for 2 years no good, as I have high metabolism now even at rest seems a battle as lungs / heart working twice as hard, Just eat junk food cans coke cola, that’s if your mum is not diabetic, I find it difficult to breath and eat so all day I eat small food but plenty junk food put 2 pounds on last week, I hope this helps as it’s all calories In the end I weigh 5 stone 2 Take care

[Popmacca]

I’d suggest steroids to them again if I were you. From not eating in hospital I went to 3 x weetabix, 3 course lunch and 3 course dinner. This was hosp food as well so cert worked for me, good luck 👍 Also ensure drinks when I wasn’t eating.

[Hopeforthebest]

Couid you try a 1,000 calorie shake once per day taken when anti sickness meds are kicking in? You can make it yourself so it can be palatable with a little of whatever fruit she enjoys added to make the taste acceptable.If not, Hasgan daz ice cream is your friend as is very calorific - scrutinise labels for highest calorie option. The cystic fibrosis website has lots of very high calorie suggestions .. The key is adding calories that don’t increase the size of the meal itself. So an extra tablespoon of oil to her portion of pasta sauce for example. Butter both sides of bread in a toasted sandwich. Buy hugest calorie bread (the difference can be up to 100 extra cals per slice! Make a very high calorie muffin (ground nuts added to the flour ) - these can be 500 calories alone we did this very successfully with my brother during his chemo. He actually put on weight. Don’t worry about whether it is “good food” - all food is good food when you are doing this and omelettes , veg etc aren’t high calorie enough. It’s about small size big high calorie extras . A Little pastry tart with a cup of tea can be 3oo -400 cals plus and doesn’t “fill you up”. Add sone oil to a small pot of humous. Focus on adding an extra couple of hundred calories every time several times per day. . Aim at 2k calories s day minimum . 1k of this can be done with these additions. Feel free to pm me for ideas x