Hi Suenmags

Sounds like we’re in a very similar situation. Doug’s op was in July ‘17 and the cancer had spread to his liver within 3 months. He had IV Cisplatin and Gemcitabine over a six month period which seemed to hold things at bay but then it spread further to his lungs (tiny nodules at the moment) and also resurfaced at the original site but the worst affected area is around his navel where a tumour has developed and is growing - the oral chemo, Capecitabine doesn’t seem to work on it.  Is this the same drug(s) as your husband has had? You mention adjuvant chemo, which is, I think, what the clinical trial at Guy’s hospital involves (docetaxel?) Has your husband has this and has it been effective? I think we’re going to go with the trial if all the preliminary tests are OK. It’s a big time commitment but hopefully it’ll be worthwhile. Our main problem right now is getting his pain under control and keeping it at a level that he can still get on with doing the things he wants to. How is your husband doing and is he having a lot of pain? As you say, it’s such a cruel disease. I really feel for you - so many mixed emotions as a partner and carer, it has put us through all kinds of hell. Sending warm wishes and strength to you both, all the best, Rosie

Hi Rosie, my husband had the whipple procedure done 3 years ago for pancreatic cancer. Unfortunately he only made it a year after. He signed up on Whipple Warriors site and found lots of people there with good information on life after whipple. It might help your husband as well as yourself.

Take care,

Cindy

Hello Rosie

Don didn't meet criteria for any trials. His first chemo session wiped him out so Monday's is lower doses. Keep trying different pain killers as he is in pain. I'll have to wait and see if that is better and if the cancer does shrink. At the moment struggling to get through the days. Good luck with the trial hope it works for your husband. My brother keeps saying to me belie Winston Chutchill  KBO keep buggering on. What else can we do

All the best suenmags

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.

Hello Rosie61,

Had the Whipple's on the eve of my 80th birthday. Demanding on the body, but life-saving! Half my pancreas taken away, but with the all clear have been leading a near normal life. So, the pain was worth it! Watch the Creon: it takes time to get the right balance. It's definitely not a case of "one dose suits all". Took me ages to arrive at a workable dose: around 15-18 capsules of 25000 units per day. Supply from pharmacists not always guaranteed - smaller unit capsules may be offered as alternative, but then you need to take more capsules per meal. I have mild dysphagia so the fewer I can "get away with" the easier it is for me.

The huge incision has healed well although my shape does seem to have been permanently altered.. Fortunately, I'm the only one who generally sees that!

my husband of 53 had some stomach pains early June, and here we now are, he will have the whipple procedure on Wed 26th August next week.  He has Ampullary cancer at head of pancreas, but his PET scan has not shown any metastasis in any other major organs or blood vessels.  The hospital have been amazing.  16 days from receiving his case file to operation.  Couldn't ask for more from them.  So now we are getting our ducks in a row as we know this is a massive procedure.  

Any advice or suggestions gladly received.  

soyabean

Hi

I had whipple op for ampullary cancer in March this year, followed by adjuvant chemotherapy for 6 months as they found cancer cells in one of the lymph glands that were removed during the op. I am now living my life as normal (Covid permitting), need to take Creon with most meals, but soft fruits are fine without, as is icecream! Can't eat baked beans anymore, even with Creon. Am starting to wonder if coconut might also be a problem - don't eat it often, but made coconut cake the other day, and have had a few issues. Maybe just need to eat less cake!