Hi Lizzie and welcome to Cancer Chat.

I'm sorry that your dad has been having trouble eating and having other problems since coming out of hospital. Hopefully some of our members that have had this surgery and experienced these symptoms will pop by soon to offer their support and advice but do feel free to give our cancer nurses a call if you'd like to talk things through. They're available Monday - Friday between 9a.m - 5p.m on 0808 800 4040. It may be worth getting in touch with Pancreatic Cancer UK as well.

I hope things start to improve for your dad soon Lizzie.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Lizzie

I had surgery at the beginning of September and when I was sent home I continued losing weight for a week or so. I also had terrible indigestion and burping. I recommend increasing the intake of Creon as this worked immediately for me. I just took one more per meal but you may find it may take some trial and error. I also recommend taking a pro biotic once he is off the antibiotics. Unfortunately the antibiotics pretty much kill off all the good bacteria in the gut, so this might also help.

Hope this helps

Mark

Before I begin, this is my experience and I am NOT medically trained.

However, what you describe is perfectly normal - My 64 year old husband had a full Whipple in 2018 for cancer of the duodenum and he still burbs, hiccups and takes medication for acid reflux.It's become a joke now that he's the only person we know ever to have diarrhoea and constipation simutanously - but that's the beauty of a Whipple!

From debillitating pain for the first couple of months, it settled down once he healed internally and his digestive system adjusted to the major changes of surgery. He had half his pancreas, gall bladder, duodenum and the bottom third of his stomach including the pylorus removed - so there was a lot of adjusting to do.

Small meals, 5-6 a day are advisable to keep discomfort to a minimum or you might find his system will react badly - this is my experience it's not across the board but most doctors suggest this. It's hard as his appetite will be down at first but persist if you can or he'll get weaker.

My husband was prescribed Fortijuice by the GP - 300 ml contains 300 calories and were all he could tolerate for the first few weeks. He was onto KFC within two months!!

His recovery was pretty rough and he was very weak, so he opted not to have chemotherapy as the tumour was contained with no trace in any other organs or lymph nodes.His consultant also said duodenal cancer is so rare, there is little evidence that chemotherapy is effective. They found tumours in his liver after a year but six months of EOX chemotherapy have shrunk them to almost nothing and the cancer has been stable for six months

Prognosis approximately 12-18 months. We are in month 13 now and he's still working, leading a fairly normal life apart from fatigue - he sleeps a lot - having to watch what he eats - tiny amounts of fibre and avoid sugary foods [doughnuts are a no-no but chocolate is fine] and he has to take six capsules of Creon at every meal. [While eating it - not before or after] We know it will come back at some stage but thus far he's still going and asymptomatic of cancer - next scan is in March. Fingers crossed.

The lack of a pylorus also causes 'gastric dumping' which will make him feel giddy and weak [if that was part of his surgery-it isn't always]

I feel for you watching your Dad in pain, I found it very distressing. My husband lost 50lbs and he's only 5' 6". Give your father time to heal more - it's such radical surgery - My husband's GP said he was her first Whipple - many GPs never see one.

I wish you both luck and a good recovery - for both of you.