Advice re loss of appetite during chemo please

[Twink]

As the title says really. I am frantically trying to keep dh alive but he has inoperable stomach cancer and started aggressive chemo last Friday. He's not been able to eat much for a while as the tumour is massive and affects the stomach function but he now has no appetite at all and is struggling to have water.

He has to have anti-nausea drugs for the first 3 days of each cycle, is it likely to be these that are having an effect? He can't afford to lose any more weight, and recently we had managed to keep him stable for around 6 weeks so this is quite a blow.

Any help or wise words would be great

So sorry to hear that your DH is ill. Sadly, I'm a bit of an expert on this as both my Dad and my DH had oesophageal cancer and struggled to eat.

You can get very high calorie drinks on prescription, a bit like Complan but higher in calories. We used Ensure but there are different brands, most are milkshake types but there are some like fruit juice. Your doctor will write you a prescription (they are very expensive if you try to buy them) or your Macmillan nurse can do it for you. If you don't have a Mac nurse yet, make contact with them. They are worth their weight in gold. Your district nurse might also be able to help - ours was able to bring round a selection of different drinks so DH could try them and see which he preferred.

There is also a powder called Maxijul which is flavourless. You sprinkle or stir it into food and drink and it adds extra calories. I added it to everything DH had, even the water he took his tablets with. I'd add it to the Ensure drinks too, anything to get some extra calories into him as he was skin and bone.

If your DH is able to take any food, soups and desserts are best. Go for 'cream of' varieties of soup as they have more calories and go for luxury yoghurts. Your hospital should have a dietician who can give you more advice so ask for an appointment. Throw normal dietary rules out of the window and add cream and butter to everything. Extra sugar too in sweet things.

If there's anything else I can help you with, don't hesitate to ask. Watching someone you love go through this is awful and my heart goes out to you.

Woukld second mummydoits advice.

If he is really struggling to eat,the nutritional supplements such as Fortisips can be frozen and sucked like an ice lolly,also good if mouth is sore,as soothing.

I once went to a fortisip study session (Yes my life is sad,I know) and they had a chef that had made allsorts with them,including adding them to cake mix etc etc.

Chemo can often take the edge of appetite,esp if person nauseated,has sore mouth,taste alteration or tumour is abdominal.

Best wishes to your dh.

I don't know the stage or grading of his disease but sometimes hospitals will do stuff like TPN or enteral feeding,dependent on circumstance xx

Thanks very much for your quick replies, am feeling a bit fragile today, normally I manage ok.

We've got some of the Ensure Plus drinks from when he first starting losing weight (pre-diagnosis) and he found it almost impossible to get them down as he found them synthetic.

He was managing to eat things like clotted cream rice pudding and some of the luxury yoghurts but since chemo started he just can't manage them.

I'd not heard of Maxijul or Fortisips before, the District Nurse is coming around for the first time today so I'll ask about these.

He's got a stage IV primary with distant peritoneal metastases. He's just started cycle 1 of DCF, with 2 more back-to-back, taking us through to mid-Dec. Then they'll retest to see if it's helping to reduce the bastard, if yes, then he'll have another 3 cycles of chemo. If no, then he won't...

If he couldn't get the Ensure drinks down, try him on normal milk shakes. DH sometimes struggled with Ensure but managed other drinks. The best ones are Mars, Maltesers and Galaxy ones - loads of calories! Or drinking yoghurt is quite high calorie too. Ordinary fruit juice can be quite good too. The exotic ones (eg mango) tend to be higher in calories. Definitely get the Maxijul powder as you can add that to any of the drinks I've mentioned. I also just remembered that DH found jelly very easy to swallow. I used to make it with full-fat milk instead of water or even with an Ensure. DH loved milk jelly, even when he wasn't ill, and he said the Ensure one tasted okay too but I'm not sure if he was just being polite! If your DH doesn't like the idea of milk jelly, make it with fruit juice.

My other bit of advice is not to feel shy about asking for anything you need. At the slightest hint of any side effect from chemo, mention it as there is almost always something they can do to alleviate the symptoms. Dad put up with a sore mouth for a couple of weeks, then got a cream which sorted it instantly. That's another area that Mac nurses can be such a help. I found it easier to get hold of them and get advice rather than trying to get hold of the oncologist.

Don't forget to take care of yourself in all of this. It's hard work being the carer and you've got a lot to deal with. Do you have any help? Do you have people you can talk to in real life? Sometimes you need to have a bit of a moan or a shoulder to cry on.

Twink - no practical advice to offer but just wanted to say how sorry I am to hear what you are going through and wanted to wish you, your dh, and your family well - my father had oesophageal cancer and suffered similar problems so I know how hard it is. Sending positive thoughts and prayers your way x

Oh bloody hell Twink I'm so sorry to read this.

My dd has had maxijul powder and you can literally add it to anything. I think you can also get an orange flavoured drink with it in nowadays. And I agree with Mumnmydoit, don't be afraid to ask for anything you need and grab any support available.

I have little in the way of wise words but I am thinking of you. x

Sorry to read this Twink.

I found that lots of little, high calorie snacks helped dh.

If his anti nausea pills are not working see the doc ASAP, as there are lots of different ones available, and what works for one person, doesn't work for someone else.

It might also be worth asking if he could be put on steroids. My dh was, and it was a great stimulus to his appetite.

hugs to you

Hi Twink,
I too am so sorry to read this, may I ask how old your husband is? You may have come across me on here, but if not I am 56, DH is 67 and we have 10 yr old triplets by ivf following the death of our son in 94. My DH has stage 4 bowel cancer with liver secondaries. He has just finished 6 cycles of chemo, dreadful what it has done to him, but the ct scan has shown very good reduction on the liver mets. He has lost almost 4 stone in weight, and has just started to eat tiny tiny amounts of food for the first time in over 4 weeks. He has lived on Ensure products and has had a job to keep those down. I tried to make my own soups which he at first enjoyed but even that stopped. The funny thing was this. The only three things he could eat and seemed to enjoy was, a peeled nectarine(no skin as he also has an ileostomy), Rowntrees fruit pastilles and loves hot Bovril which is full of goodness. His next stage is livery surgery, we go to see the consultant in London on Thurs, but that has to be followed up by a further 3 months of the same chemo, then ileostomy reversal! I feel for you, it is hell. Just try and encourage, fluids are so important as Harry ended up in hopsital very dehydrated, now I see the signs. Please cat me if you need to talk xxxx

Thanks very much everyone. We're off to the oncology clinic this morning so will make sure they're aware of all his symptoms & I'll ask about steriods. It's hard for him as he's a very private, self-contained person and loathes having to take any sort of medication as, until now, he's rarely ill with anything at all.

Will try making some soup and his eyes brightened at the idea of jelly. I'd wondered about Bovril (distant memories of football terraces) so will get some of that too.

A friend who was a district nurse suggested freezing pineapple juice in ice cube trays as apparently sucking them helped some of her patients. Tbh I'll try anything!!

Triplets, he's only 51, apparently very young to have stomach cancer at all,let alone this rare form. He doesn't smoke or drink, eats a healthy diet and until last week went to the gym 4 times a week. I'm nearly 40 and we have a 9 year old daughter.

Another question for you all, what did/do you do about work? My GP has signed me off until the end of this week but I need to see my boss tomorrow to discuss the future - a difficult concept for me right now. I'm well aware that I'll need my job but at the moment I want to spend what time we've got together. Does that make sense or is it sentimental twaddle?

Twink, my dh was 44 when he was dx with ternminal pancreatic cancer, I was 46 and at the time mt children were9 and 6. At the time they gave him 3-6 months, but thankfully he lived 18 months.

I teach. Initially I took time off school (they were exceptioneally understanding) but I evenetually went back to work part time. There were several reasons for this. We wanted time together, but we also wanted life to be as normal as possible. I knew that I would need the money from my job 'after' (sorry if that sounds cold, it isn't meant to be). I also loved my job and it gave me a patch of much needed 'normality'.

So we had time together, but I also got a bit of a break from it all. It was so very hard to know what the right time was, you have all my sympathy.

I worked up to the last month of his life, and went back to full time work in Sept (he died in June)

Have you been put in contact with a Macmillan nurse? Because they are there for you as well as for your husband. They can also help you through att the benefits issues that may crop up.

Hugs. Please cat me if you want more help privatly. I'll do whatever I can to help.

So sorry to hear about this. Nothing to add to the food, I'm afraid as other people have obviously been far better at this than we were when a relative was ill. Support the comments about MacMillan nurses, they are great.

What sort of work do you do? Is a period of unpaid leave out of the question? Does your child's school know what is happening? In a similar situation with a friend once it got round the school she had lots of help from other parents with lifts to hospital/ looking after children.

Can't advise you on the work front, I'm afraid as I'm a SAHM. I was thankful I didn't work, tbh, as DH couldn't drive (epilepsy as well as the cancer) and I needed to chauffeur him everywhere.

I second MB's advice about the Mac nurses. They are there for the whole family and will give you emotional support as well as practical advice (claiming Disability Living Advice or getting a Blue Badge for parking, for example).

Thank you again!

I met my boss yesterday and she's offered me a sabbatical with re-instatement of my contract when I'm able to go back! That's a huge weight off my mind so I can concentrate on the family without stressing about what's happening there.

Dh was really grotty yesterday but stayed up as the District Nurse was due to come & change dressings etc. Didn't arrive, apparently coming today instead - do these people not have telephones ????

Hi Twink, glad work has helped you out, and grr at DN not showing up.
Sympathies to you and dh for having to go through this.
My mum has multiple myeloma (in remission currently) and was in hosp for a year having chemo/recovering.
She too lost loads of weight and lost her appetite, plus had loads of mouth ulcers.
We basically offered her everything and anything, she didn't like the fortified milkshakes. ANy time she expressed a preference for 'x' we would rush out and get loads!
then a day later she'd be off those and we'd have to find something else.
we ended up taking home and eating all sorts of weird stuff

Tinned fruit - in sweetened water, anything cold to suck on, and at one stage, lager
the hosp turned a blind eye to anything (she was in a private room with her own fridge which helped).
(btw, she only managed a few sips of lager in case anyone is tutting out there!).

Good luck with DN today.

there's no excuse for not telephoning. they may have had to see someone in even greater need but they could still phone! Glad your work are being helpful.

Hospitals used to encourage people to drink stout, anything is better than nothing.

LGJ relucantly keeps an eye on this thread, as her DDad was diagnosed, with secondaries in the liver and bones yesterday. He can't have a biopsy for another three weeks, as he needs to be off his blood thinning drugs for three weeks.

So yes, he is dying, but no we don't know the extent of it. It feels like no mans land. The only thing keeping me going, is the fact that he had a scan six months ago and that was clear. Not fooling myself but hoping that it has only been on the march for a while. Which may give us longer than the six months my instincts are telling me.

Apologies for the hijack Twink.

Just wanted to let you know that Harry went up to Kings today to see Prof Rela about the liver surgery, he has 3 mets. His scan result was very good, huge reduction in size after the awful chemo, weight loss etc. Anyway he has put him in for next week, goes up on Tues and op on Weds, will be there for a week, kids on half-term and not allowed to visit as they are under 12, but I am sooooo relieved he is having it done, another step forward!

I am so very pleased for you.

Much love

LGJ

I don't have much advice for you Twink, other than to empathise as my mum had stomach cancer diagnosed 15 months ago.

The 'Ensure' drinks are very good; full of valuable calories.

Wishing you love and strength x

Triplets, it's so good to hear some positive news. Shame about kids as sometimes I think it's good if they can see what's going on.

When dh goes for his chemo clinic next week, I'm in for a mamogram & ultrasound at the same time (oh,yes never rains etc!) so dd will go with him as I hope it will help her to see where he goes and what happens.

LGJ, you're not hijacking, it's grim, I've just seen your thread. I'd like to think we can all help each other through this bastard thing (my rlf are making up names for it, dubya seems quite a popular one). I understand too about the no mans land, we're waiting for tests after this intial 9 weeks of back to back chemo, which gets us to just before Christmas so what chance we'll get the tests then ?!

If they show the tumour has been reduced by the chemo, we gear ourselves up for up to another 9 weeks of it, obviously depending on the wbc.

This is what will happen as the alternative can't happen, today is my 40th birthday and life begins now, doesn't it...

Dh has been great today, he's felt awful but pretended to be ok. I love him to bits, and can't imagine life without him.

Off to bed now, can't type anymore

Twink - I'll continue to think of you over the next few weeks. And Happy Birthday for yesterday Good luck with your own tests next week, just how much bad luck can you have?

LGJ & Triplets good luck to your families too.

Thanks for the messages, it really helps to know there are people both in RL and on Mumsnet who are wishing us well.

How things can change in such a short period of time!

Dh felt really grotty for 8 days after he first started chemo, as I said above, wasn't able to eat,was sick and lost yet more weight. But during the 2nd week he gradually improved, had some solid food (!) and the oncologist prescribed stuff to sort out the simultaneous diarrhea and constipation which helped enormously. He's a tough cookie & dragged himself to the gym and has continued to go 3 times a week. He's set himself a chemo treadmill PB which tbh lots of healthy people would dream of. He's managed to regain 3kg which I put down to Green & Blacks chocolate which he couldn't eat for ages but this week is the top thing!

I'm really hoping that chemo is helping to reduce the Primary as he's able to eat a much more varied diet, including a few tiny portions of vegetables which were previously out of the question. Toxic burps are still a huge thing though but that only affects everyone else as he (thankfully) can't smell them.

My results were clear but I'd never been able to accept that they'd be anything else. I just have a follow-up appt to find out what will happen next.

The downside now is that dh has been feeling grotty since Thursday, which hasn't impressed him and is facing Toxic Tuesday (day 1 cycle 2) knowing what will happen rather than being in blissful ignorance.

I've booked a weekend away for the family just before the end of the cycle when hopefully he'll be feeling at his best but if any of you have any more tips to help him & us through the next 10-12 days in particular please let me know.

Thanks,

Kx

Your dh sounds like he's got a great attitude Twink - I wish him well.

Stomach cancer can be awful, but as I posted earlier, my mum was diagnosed in July 2007 and is still going strong. She was never going to let it get in her way, despite having a complete gastrectomy

Hi all, esp you Twink,
I think you have to learn to live life on a rollercoaster for a while, because thats what its like. Harry had his liver op, it was very successful and came home last Mon, Harry of course though will not rest, has over done it and is now paying the price, he is in a lot of pain. It has ben very stressful since last Frid and has triggered off my IBS, so I am feeling bloated and sore and very fed up, looking after everyone and getting no help! Thats my moan for today...sorry