Whipple's one month on -- ANY advice would be a help

[cheshire_cat]

Hi -- my mum, who's 65, had the Whipple's op a month ago. She was in hospital for 2 weeks and has now been at home for just over two weeks. She's doing well but the big problem is eating. She is eating, but feels very sick a lot of the time and has terrible wind. Sometimes she is sick, especially in the evenings. She lost a lot of weight before the operation and then inevitably lost more in hospital and was very slim to start with. She now weighs about 7 stone, which is 2 stone under her normal weight. I am absolutely terrified that they will refuse to give her chemo because she's so thin -- I know the chemo makes you lose yet more weight. I am doing EVERYTHING I can to get calories into her but if she eats anything too fatty or just eats too much, she is sick. Unfortunately all the food supplement drinks like Ensure and Procal are either milky or very sweet, and she cannot keep them down. I am at a loss to know what else to do. I have given up my job to look after her and spend most of my days trying to buy and cook food that she may be able to eat.

Does anyone have ANY suggestions that may help? I would be so grateful for any tips. Mum is already taking Creon and that seems to work ok. She is also taking anti sickness tablets to combat the sickness caused by the painkillers. I am at a loss to know how to get calories into her without making her sick.

Help!

[PCUK Nurse Jeni]

Hi There,

Your mum will not be refused chemo because she is thin. All chemotherapy is individually ordered and is based on the height and weight of the patient, and their body surface area. This means that she will get the correct dose for her body mass.

Has she been offered a clinical trial? There is one running for post-op patients called Espac 4.

Try peppermint tea/cordial for the wind. Or colpermin capsules (peppermint oil). These usually produce good results. She should try increasing her creon slightly, or breaking the capsules and sprinkling over the food directly (she must eat the food immediately after doing this though). This may help with the sickness.

Hope this is of some help?

My details are at the top of each forum page should you need to contact me.

Jeni (PCUK).

[cheshire_cat]

Hi Jeni -- thanks very much for replying. Do you know why she is still being sick four weeks after the operation? It usually happens in the evening. She feels fine first thing in the morning and the sickness creeps on during the day and is terrible at night. She is taking the CREON both before and during meals as she eats slowly so I think she's doing all she can with that. I don't really understand how it works. Could it be making her sick?

Yes she has been asked to take part in the ESPAC 4 clinical trial. In fact the specialist is pushing very hard for her to take part. I have tried to do some research into it but it is so very hard to know whether it is a good thing to do or not. Do you know anything about it? If so, would it be possible to talk to you about it? I find it all pretty terrifying.

All the best

Anna

[AnneD]

Hi Anna,

Just a note about how Creon works.

Creon contains digestive enzymes obtained from the pancreas of the pig.

These enzymes supplement those produced by the patient's own pancreas which may be in short supply following surgery to remove part of the pancreas.

When Creon is taken with food it will aid the breakdown of the food in the small intestine.

It is unlikely to be making your mother sick.

The sickness could be a result of slow emptying of the stomach or of wind for example.

I had a Whipple's procedure in December and have been eating normally for a couple of months now.

At first I had frequent small meals and was mainly eating Ready Brek, soup and mashed potato.

Hoping your mother starts to feel better soon,

Best wishes,

Anne

[PCUK Nurse Jeni]

Hi Anna,

Of course it will be possible to chat. I know about Espac 4, and in fact, am still involved in seeing patients for this trial and for their care while they are on the trial.

Regarding the creon, sometimes it is due to a reaction to the make up of the capsule, so opening them out and sprinkling the granules on the food would bypass that problem. It would also indicate if a different form of enzymes would be beneficial.

Please email me at support@pancreaticcancer.org.uk, providing me with your phone number, and I will call you.

We can't post any personal info on here, so using the support email is the best way.

Hope to hear from you soon.

Jeni.

[cliffp]

Hi

I had my Whipples nearly two years ago and although I was told I didn't need and didn't have chemo I did share your Mum's problem over food and appetite for many months.

I think it's just a matter of patience and then the growing re-discovery of taste and eventually pleasure at eating all the things that I really fancied. I ate more chocolate, sweets and biscuits than ever before and gradually the weight returned. I have now put back the 30lbs or so that I lost, and (boasting a bit) twice run a 4.5 mile charity run, raising about £2,000 for Pancreatic Cancer UK. I know I am one of the very lucky ones but the Whipples can work wonders. I hope it does for your Mum

Cliff

[cheshire_cat]

Thanks very much to those of you who've replied. It's great to hear positive stories and to know that other people have had similar problems. Mum is now doing a lot better with eating, is feeling less sick and is also managing to take some food supplements. We saw the consultant last week and he said she was doing really well, which was encouraging. I still don't think she's putting on much weight but he said it's very hard to put on weight quickly after such a big operation because the body uses all the calories to heal. I am still very worried about her having chemo when she's so thin -- but the specialist seemed to think she was already strong enough to have it and should start as soon as possible -- despite it being only 5 weeks since the op. We are off to see the oncologist next week so will wait to see what he says. I wish with all my heart that mum didn't need to have chemo but she definitely does.

Thank you again -- and Jeni I will contact you again about the trial.

All the best

Anna

[Lallym]

hi

I went in for a whipples a month ago. During the operation the tumour ( at the head of my pancreas) was deemed to be inoperable so it was not removed. All the other aspects of the whipples procedure were completed and my jaundice has gone.

Eating is hit and miss - small meals regularly and these things seem to work - soups particularly lentil, alpen, pasta with tomato and tuna , grapes, coke, fruit juice

A problem is staying regular and I have extreme fluctuations between constipation and diarrhoea and I don't know how to control that

My main concern is that one month after surgery I still require strong pain killers and without them I get quite unonfortable from a deep hollow ache across my belly that runs right through to my back.

I'm taking max dose of co-codemol combined with diplofenac suppositories and I really wolud like to get off them

Does any one know if this level of discomfort is normal one month after surgery , I really am quite worried that something is not right and want to get this sorted before I start chemotherapy / radiotherapy

My best wishes to all out there who are fighting this particular fight at the moment - never give up hope

Mike Lally

[CFF]

Hi Anna,

My dad was 75 when he had the Whipples and painfully thin. He got away quite lightly with the chemotherapy in terms of side effects.

He was also quite sick for a few weeks afterwards and this was something to do with his stomach not emptying (as I think Jeni mentioned) but then he was fine.

My trick re the food was to make batches of calorie laden soup - you'd be amazed at how many calroeis and nutrients you can get into one small bowl!

Hope your mum feels better soon. Keep trying to find answers from specialists, they wo'nt know there's still a problem with the sickness unless you tell them.

Caroline