Hi Rosie.

I hope you and your hubby are well now?

My dad had whipple procedure done almost 2 years ago, and has been doing amazing. Then a few months back he started struggling with eating much, had terrible diarrhoea , bloating & extreme tiredness. Blood test first cane back all clear, about 4 - 5 weeks ago, then 2 weeks ago, more blood tests showed raised cancer markers. 

I just wondering if anyone else had this after whipple?

My dad is only eating tiny portions , is very bloated & uncomfortable  & has lost a lot of weight since this started few months ago. 

I am desperately worried the bloods & how he is feeling means cancer is back. His GP sent off for emergency scan 3 - 4 weeks ago & emergency appointment 2 weeks ago. We had heard nothing so my sister called the hospital and he has appointment to see someone tomorrow as to wy he is so bloated etc. Then I take him to see GP  again tomorrow at 4pm.

I am dreading did it out if cancer is back as not only do I have my Dad to worry about , & obviously my Mum, but also my hubby who goes into alcohol detox soon too. 

I am SO scared xx

Hi Daddykins

I’m really sorry to hear about your Dad and I hope he’s not in too much pain. It sounds like the medical team need to get on top of his scan quickly so you can see what’s going on. My husband didn’t have the same problems as your Dad but his cancer had already spread to his liver when we got the results back after his Whipples op. He has had several cycles of chemo over many months and is currently on Capecitabine which is a tablet form of chemo, although this may stop shortly as we’ve been referred to Guy’s for clinical trials. His cancer is now in four different places and he is on continuous morphine and amytriptyline to help manage his pain. Do not despair! We are living with cancer and still doing everything we can to enjoy our time together and with our family. Last week we had a family holiday in Wales and Doug (my husband) played 18 holes of golf with our 3 sons! It’s a tough time and each day brings its own challenges but we keep tackling things head on and refuse to give up on life and love. I hope you have support to help you to cope, whether it comes from family, friends or both - but do draw these people close around you and don’t be afraid to ask for help when things get tough. Most people really do mean it when they offer to help and appreciate the chance to do something for you and your Dad, no matter how small, I think it helps everyone to deal with the awful situation we find ourselves in. Good luck to you and your Dad and I really hope you both get the care and support you need.

Hugs  

Rosie x

You must be really worried and scared. I am too. My husband had Whipples last December but only had about three months before being told it was back. Very soon after his op. It is so worrying and we seem to be always at the doctors or hospital. Having chemo now and hoping it will shrink his tumour. Cancer is a very cruel disease. You have so much to cope with at the moment. Wishing you all the best

my mum has the whopper in sept 2018 and they’ve found cancer markers. 12 weeks later and numerous complaints from us (as lumps been growing) they’ve now found secondary cancer 

the treatment has been disjointed, cancelled 3 times with 8hr wait to see doctor last week 

it’s a farce and I feel she’s being missed 

the stress is just too much and she’s rapidly going down hill (age 78 but usually fighting fit!) 

any advice welcome 

based in Hillindgon NHS trust 

my mum has the whopper in sept 2018 and they’ve found cancer markers. 12 weeks later and numerous complaints from us (as lumps been growing) they’ve now found secondary cancer 

the treatment has been disjointed, cancelled 3 times with 8hr wait to see doctor last week 

it’s a farce and I feel she’s being missed 

the stress is just too much and she’s rapidly going down hill (age 78 but usually fighting fit!) 

any advice welcome 

based in Hillindgon NHS trust 

Hi Rosie and Everybody else who has posted.

My Dad is currently having a Whipple operation at a hospital in London. He went down to theatre at 9am and we’ve been told the op will take 12 hours!!! We’ve been told to ring the Stepdown Unit at 6pm tonight for an update on how he’s doing and when they are hoping he will arrive with them. 

Im trying to pass the time by reading people’s stories and finding out about their outcomes etc.

Dad has a very rare cancer that has consumed the whole of his pancreas. He has bronchiectasis and the mucus build up around his organs, and the strain on his digestive system whilst trying to breakdown the mucus, has finally taken its toll.

Its taken about 2 months to get where we are today as he has needed numerous scans and surgeons had to be sure he could cope with the surgery. The strain on his chest whilst asleep on the table so long is immense. Luckily, Dad is a very fit 66 yr old, never smoked and probably drinks 1 bottle of wine a year!!  He eats very well. Mum got breast cancer in her late 30’s and she immediately went vegan and followed Professor Plants diet. Dad did the same diet to help spur Mum on and now Mum is still going strong at 56! Although they now eat meat, they don’t eat excessive amounts, choosing instead to eat lots of fresh veg, nuts and pulses.

The surgeons at the hospital in London have said Dad needs to carry on with the healthy diet and his Creon which helped him slowly regain some of the massive amount of weight he’s lost, before his surgery. The Creon sounds daunting due to the amounts taken. Dad takes 750,000 - 100,000 mg (I think that’s the dose. I know it’s a huge amount) He was taking loads of tablets with each meal but his GP has changed the capsule size so he doesn’t need to swallow down so many to achieve the correct dose. Hope that bit puts your mind at rest about your husband’s dosage sizes Rosie!

In regards to your post Jeniwuk, are you being treated at a specialist unit? When Dad got his first diagnosis from our local hospital, I could see it wasn’t an area they were well versed in. I got straight on google and found on the pancreatic org website that there are specialist treatment areas. Everybody can phone for a referral. I phoned immediately and was speaking to a nurse who set up a key worker and the hospital in London took over Dads treatment. Perhaps see if you can do the same Jeniwuk. Unfortunately I learned from my Mum’s experience with cancer, you have to fight and keep fighting. The NHS is under such strain you need to make yourself heard then they can help you. I don’t mean by being aggressive, but by doing research and showing you have some knowledge of the situation. I found if you showed the surgeons what you were willing to do to help aid them, they got on and we all worked as a team.

Its exhausting, and I was 18 at the time so didn’t have a clue, but we got infront of the right people and made ourselves heard. If I’d sat back and listened to my GP, we’d have got nowhere other than the bottom of a waiting list. 

I’m sending my best wishes to you Jeniwuk and hope you are holding on in there and getting the treatment and help you need.

My main reason for my post is to ask for some help please. Yesterday when we sat listening to the surgeon going through all the complications of the surgery, he mentioned about nicking an organ/gland that is behind your digestive system and up a bit higher. He said if it was damaged it would secrete a milky substance into his cavity so they will see they’ve nicked it, and fix it. However it could cause Dad to see in colours when he eats??? It was info overload and stupidly I should have asked the surgeon to repeat himself, but as I was 1 of 4 sat there, including Dad, I didn’t want to distress my clearly anxious Dad by dwelling on a complication further, so assumed one of us will have understood what the surgeon said. 

Well, none of us could remember when we got in the car at 10pm last night, after leaving Dad behind to get some sleep ready for today. We spent the 2 hour car journey home googling away but no joy. Mum and I have been awake all night, texting each other with links to various case studies and other people’s outcomes. We were both looking for this elusive gland/organ! The only good thing is that I know I didn’t dream up this gland/organ because my Mum and husband heard it too! I’m so anxious I’ve been away with the fairies since all this started in late November. I’ve done so much researching, I’ve been inventing things due to mixing various bits of info together.  

If anybody has even a tiny clue about I’m going on about I’d really appreciate you filling me in. We are prepared for the Creon and insulin dependence, but not for “colour vision when eating?” I’m so confused.

Thank you for taking the time to read my waffle, and for giving me some more info via your postings. 

Hi Becki,

This must be an anxious day for your family today. It doesn't seem fair that someone like your dad, who has led a healthy life, still succumbs to stomach cancer. The fact that he is very fit and, only 66, should stand him in good stead for his operation.

I am afraid that I know very little about stomach cancer, as I am a breast cancer lady, but I just wanted to suggest that it might be worth phoning one of our nurses here for answers to your questions. Most of us on this site are cancer pilgrims and have little or no medical knowledge.

The nurses should be able to help you out.. Their number is at the bottom of this page and they are here from 9-5, Mon - Fri. THe number is Freephone.

This will teach you to ask questions about things you don't understand at the time. It is probably more stressful for all of you not knowing, than it would be if you knew.

Please let us know if you get a satisfactory answer. We are always here for you.

I am hoping and praying that your dad gets through his operation well.

Kind regards,

Jolaminne xx

Hello everyone. Just fallen on this site so unfamiliar with it.

However, just to let you know around March 2018 following admission to hospital with severe jaundice it was discovered that the jaunndice was caused by a tumour on my Pancreas. A stent was fitted to allow me to recover from the jaundice: surgery to remove the tumour could not proceed until the jaundice was dealt with. A few weeks later - on the eve of my 80th birthday - I underwent a Whipple's procedure.

Almost half my Pancreas was removed plus the whole of my duodenum. It was not a pleasant experience! But, here I, am 18 months later, free of pain and living a 'near normal' life. 
The original prognosis gave me just months, now I look forward to a good few years more and that's a result! Chemo was testing and did make me quite debilitated; suffering frequent readmissions to hospital as my system struggled to deal with the chemicals. 
The chemo severely compromises the immune system making it very easy to pick up infections from anywhere; so, I  was virtually housebound for over six months.

I do fatigue quickly if exerting myself significantly - I have resumed my love of DIY - and as a consequence tend to sleep a lot more in the day than might be typical for an 81 year-old.

Hopefully, with a little more time, my energy levels will increase and allow me to tackle the vegetable plot which due to my "absence" has turned into a jungle!

Creon is my life-line: it took several trials and many months before I settled on a dosage which worked for me. Unfortunately, it's not a case of 'one size fits all'. You have to go through the 'trial and error phase' before you get it right!

I hope this has been helpful for those who've only recently gone through this process. Every case is different and I consider myself extremely fortunate: had the jaundice not been diagnosed and dealt with when it was it is unlikely I would be writing this chat letter today.