Whipple surgery results

Hello I'm sorry to hear your dad's diagnosis. You didn't give his age. My brother at 74 was in similar situation. He was quickly diagnosed, went speedily into the Whipple and 12 lymph nodes removed had cancer. His Consultant advised  chemo could help sweep up the left over traces. It did take my bro a good 3 months just to recover from his long 9 hr op in hospital, the scarring, getting his digestive system ongoing, but he did gain his strength slowly but surely. Sept 7th hospital op. In Dec (5th) he felt upright, joyful hopeful again, gained his appetite and with Creon his toileting went as expected. He hesitated on taking up Chemo. He finally thought why not - TRY it. He attended 4 sessions, it wasn't the hard Firefox it was Cemb* the name, and surprisingly, first one just felt tired for 3 days, His subsequent following 3 Attendances were the same. No serious affects. I can only think it has to be your Dad's choices. I've heard that this chemo can do marvelous things. 

The Covid arrived, with all the unknown consequences.  Chemo sessions were delayed, posponed and with my brother glad of the avoidance of it- was his preference. He had become well enough to attend to his hobby of weekly dance hall sessions. He was very content with his health. 

Another 12 months on, when invited for usual scan, he was inf it had spread - yet he still felt well. 

Many on here write to say chemo was okay. Many speak of good results. 

My brother was inf later he could be offered 'Paliative Chemo but he didn't wish it. 

If you read through the forum I think a month ago a chap had same, whipple chemo and 5 years on he's very much well. 

I'd just say listen to what your Dad says he needs and support him best you can.  

Hi and welcome to the group.

Everyones experience is different so I can only tell you about my experience.

I had the Whipple procedure in January. Subsequent tests showed 2 of the 20 lymph nodes removed were positive therefore referred to oncology for chemo.

It takes up to 12 weeks to recover from surgery before chemo can begin.

I am on a treatment called Folfirinox, which is a combination of two different chemo medications. I am currently at the hospital getting round six of a 12 course, usually on a fortnightly basis. This consists of a half day at hospital then a bottle attached to a line in my arm that stays connected for another 46hrs. The bottle is then removed by community nurse, who also comes a week later to flush the line and then again 2 days before chemo day to take bloods for testing.

Each cycle has created different side effects.

Sickness diarrhea tingling in nerve endings mainly in my hands and fatigue. Mostly can be controlled by the meds they send you home with.

I feel very lucky that my side effects seem minor as I was worried before starting.

I am 58, and came through the operation surprisingly well, out of hospital on day 10.

Hope this has been of some help

Hi thank you so much for your reply. He is 59 yrs he wasn't lucky after surgery he spend 3 weeks at hospital and had a leakage from his stomach unfortunately he still got one of his drains on. Thank you once again for your experience.

It did take a while to get my appetite back and adjusting my pancreatic enzyme replacement tablets to get my weight back up.

His dietetic never mentioned about trying different doses of enzymes but I'm reading about it on forum and most people saying it's like a trial to work out what actuall dose is good for you. Is that what you been doing trying different doses?

Thank you for your reply my dad is 59yrs old.

Thank you for your reply my dad is 59 yrs old

I have just followed the advice of the dietitian. I am on Creon 25000. 4-6 tablets with a main meal and 2-3 tablets with snacks. After surgery it takes time for the digestive system to wake up, leading to malabsortion weight loss. This levelled out, but then the chemo can also cause malabsortion so needed to adjust again to the dose above. I am also on a protein drinks to help.

Oh its very early days of recovery of this Op for your Dad..My brother too came home with a drain. He thought it would never get removed. I do recall he wasn't invited for Chemo until a good 3 months recovery after his op. In the time, his rest and recovery was slow. One Day at a time. When he spoke to Medics that his toileting was not normal they suggested trial on the Creon intake. What he orig was told " 2 per meal intake - was greatly improved with 5 per meal. They say you can't over dose. 

It's so sad to see a loved one in discomfort. At times I'd put him into his dressing gown help him into my car and wed take a drive out. Any normality of mind set aided him towards a recovery from the op. It relieved him to think of something else that drive out in the fresh air. Returning to happy places. He valued the now and each day keeping positive. I offered him all sorts of food, on the hour, whatever he felt like at the time. We got back to the sharing of our fish and chips but it was a good 3 months post op.  It does take time. He had lost a lot of weight, being 6ft 3" but begun slowly putting it back on. He walked around his block of houses to increase his stamina. We read on every type of health foods and proteins.

Bit at a time. 

GQ7884 Hi! I'm John and I'm new to this forum I'm sure that it will be helpful.  I'm 69 and, until a few months ago, I was a volunteer tow path 'ranger' working on the beautiful Llangollen Canal. My cancer diagnosis (duodenum) came hot on the heels of learning that I had Stage 1 Prostate Cancer, which is under a three-monthly review via PSA checks. Anyway,  I had the Whipple surgery on 11 July 2024, and the only cancer found was located in the tumour which was successfully removed. Although I made sufficient progress to be discharged on 18th July, I was back in hospital with a serious infection just three days later and stayed there for three weeks. I lost a serious amount of weight in hospital and, even though I've been home for almost four weeks, I'm finding it a real challenge to put the weight back on.

I've had dietary advice and I'm gradually regaining my appetite. Getting the correct Creon dosage is, I believe,  a matter of trial and error and I'm hopeful that I can rebuild my strength in time for the chemo that I'll be undertaking in a month or so. 

I'm finding that I have days where my energy level is quite good. This usually leads to me over-extending myself and is followed by a day where I'm too tired to function. It's just eight weeks since my surgery and, after a three week setback with the infection,  I think I'm doing OK but would be interested to hear from others who have undergone the rigours of Whipple surgery.  Sometimes I feel like I've been in 12 rounds with Tyson Fury.