Hi,

I haven't had pancreatic cancer but I have had acute pancreatitis (after a failed ERCP to remove a stone in my bile duct) and I suffered the same symptoms as your husband. I couldn't eat for months as I didn't feel empty or hungry. The thought of, sight of & smell of food made it worse. I too was on food supplements (Fortisip and Fortijuice) and at my worst (I lost 4 stone) I was drinking 3 a day. I was lucky in that one day I suddenly felt hungry - as if someone had flicked a switch. 

It takes a long time for the pancreas to recover (I'm assuming your husband is having treatment). Has the hospital or his GP referred him to the hospital or community dietician? They really should do that before the weight loss becomes a big concern. My gastro consultant was of no use but he referred me to the hospital dietician whilst I was in hospital. Once I was home my GP then referred me to the community dietician as I was still losing weight. If your husband isn't currently in hospital, get your GP to do a referral now as the community dieticians take a while to get back to you.

Meanwhile, don't try and give your husband too much food - little and often, otherwise it will put him off. High calorie food is what you are aiming for - rice pudding made from full cream, cereal and hot drinks with full fat milk (hot chocolate is good), a crumpet with butter and honey etc. No fatty or processed meats as the pancreas finds them hard to digest when it's damaged. Lean chicken or fish is best. Try a fruit smoothie, yoghurt etc. I existed on malt loaf with butter (the only thing I enjoyed), boiled sweets to suck (calories in sugar) and half a fish finger sandwich sometimes! To make the drinks more palatable I put full fat vanilla ice cream in the dairy based Fortisip (which is just like Ensure) or lemonade in the Fortijuice. My husband cooks in our house & he learned to take the lead from me, asking what I would like as a 'snack' meal. One day he made me a small Yorkshire pudding with a tiny bit of gravy & I managed to eat it because it was small - anything larger would have put me off immediately. 

I hope your husband's treatment helps him & hopefully his appetite will come back slowly. Good luck to you both,

Angie (Stage 3 melanoma patient since 2009)

I forgot to add, I also took tablets to help my pancreas digest food whilst it was recovering. Your husband should ask if this would help him - they don't help the appetite but they do help to digest the food that you do manage to eat. This link may be helpful www.pancreaticcancer.org.uk/.../

Thank you so much for your response. He is having Chemo and the Dr gave him Creon right away, he has the Ensure drinks which I add as much as I can to it. It is like a psychological issue, like someone who is anorexic would have. He is also on Mirtazapine which is supposed to give you an appetite. I am booking him I. With his GP for next week and they are getting the hospital dietician to contact us again next week.   Hope you are feeling ok

I'm glad the GP & dietician are booked - they may be able to suggest other ways to help him to eat. Don't be surprised if they say he needs to take more Ensure (depending on how much he's been prescribed daily).

It's difficult to explain how a pancreas patient feels about food & eating. It's not that they deliberately refuse to eat - it's more that the feeling of bloating & fullness makes the appetite 'switch' turn off so their body doesn't tell them it needs sustenance. They can't force themselves to eat because it then does become psychological - they feel sick swallowing the food, they start to feel sick & uncomfortable at the smell & sight of it. That's why very small amounts throughout the day is the only way to get any sustenance. I would have half a weetabix in full fat milk & with sugar on for breakfast & I was lucky if I ate it all. The rest of the day I would have a slice of malt loaf, sometimes a yoghurt, a little cheese on a toasted teacake. I would also sleep a lot (11 hours at night & 1 hour cat naps throughout the day so I felt I was having to eat every time I was awake). It doesn't help that it's winter time (I was ill from December onwards) so you can't get any fresh air & have a little walk to try & feel a little more in need of some food.

I lost 4 stone over 6 months (fortunately I was overweight so could stand to lose some of it). Once I started to slowly eat again (it took 2 months to get back to full portion sizes) I started to increase my weight. After 6 months I had regained a stone & now, 3 years later, I've regained another 1.5 stone & am at a healthy weight. I stopped the Creon a year after I became ill & I've had no lasting problems with my digestion. Hopefully the chemo will help deal with the cancer & then his appetite will slowly return but it is a long slog. You don't realise how important the pancreas is until it's damaged. 

Good luck & please let us know how your husband is getting on.

Hi, I was diagnosed with pancreatic cancer 20 months ago and have had two different kinds of chemo since diagnosis. 
I lost 20kg  fire diagnosis and have found it impossible to gain it back. 
I find eating very difficult, full all the time, and can’t taste the food that I do manage to eat. 
I have an amazing hospital dietician who calls me regularly and who I see as an out patient as well. 
Very little and often I suppose is the key, my dietician has me eating 6 times a day, granted very very small amounts. 
High protein and high fat foods as well as creon to help with absorption of the fat and protein (my cholesterol is fine on the high fat foods). I feel full and bloated with the tiniest amounts but i manage to get them in and most of the time they stay there with just the odd day of vomiting and this is if I have eaten maybe a spoonful too much or connected to my chemo. 
I hope your husband manages to find a balance of what he can and can’t manage, as it is a fine balancing act. 

Thank you for your response, it has helped me to understand more. I just wish I could do something to help him eat. 

I’m not sure if my reply came back to you. But thank you so much for your information.