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Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Wed Jun 04, 2014 4:39 pm

My husband was diagnosed with Pancreatic Cancer in June 2012 at the age of 34. I detailed our story in an earlier post in November last year. After two unsuccessful attempts at the Whipple in the UK he was deemed in-operable so we went to Heidelberg University Hospital in Germany who after 11 hours successfully removed the head of the Pancreas and Tumour (please see my story titled –Successful Surgery in Heidelberg Germany - inoperable in UK – under the Advanced Cancer index). After the surgery in Germany my husband was left with a Stoma which was successfully reversed in the UK on 14th January 2014. They did find something within the area that looked suspicious which they removed and sent to the labs. After a long two week wait the results came back as normal, no traces of cancer cells. David had a CT Scan on 20th February 2014 which was primarily to ensure everything was working as it should be following the reversal but they also checked for re-occurrence of disease and again all clear. His CA19 levels were at 30 which they had been around for some time now after the surgery in Germany.

In April this year David started to experience abdominal pains after eating, the pain came in waves almost like a contraction, started of slow, built up to the peak of the pain then subsided. This was happening about every 10 minutes. After several doctor/hospital visits it was most likely a kink in the bowel which would possibly correct itself. His bloods were taken and his CA19 level had risen to 2300. I tried to convince myself that it had risen due to the kink in his bowel. He had a CT Scan on 17th April which confirmed to our devastation that there were signs of re-occurrence of the disease. His CA19 levels were now 3000. There are 4 spots 2 under the liver and 2 in the area where the Pancreas was near a vein. They were still adamant that the pain was most likely an obstruction/kink in the bowel which would clear itself. It was our wedding anniversary on 5th May so we had a BBQ to celebrate with our family and friends and David had a mouthful of chicken and some sweetcorn. He was in a lot of pain trying to digest the food by 10pm in the evening he was rolling around on the floor so I called an Ambulance. He was admitted into hospital, I won’t go into the shenanigans/uncertainty/neglect/lack of ownership between each surgical area (bowel, general and Liver) we recieved during his stay as would be here all day. After various scans/xrays and subsequent MDT meetings the general consensus was that it was an obstruction with most likely cause being scar tissue from previous surgeries. He has had 4 operations in 18 months. A tube was placed through his nose into his stomach to drain away the fluid collection this would relieve his bowel of pressure and clear the blockage. They were happy it worked he opened his bowels and was immediately discharged on 14th May at 6pm. He had a bowl of soup the next day and was admitted back in on 16th May with the same symptoms. After raising a complaint about the above mentioned lack of ownership and who was actually going to take responsibility for David and the plan going forward the decision was made to operate. The surgery took place on 22nd May. The cause of the obstruction was tumour pressing on the bowel causing the bowel to thin and obstructing food flow which was causing his pain. They have performed a by pass to move the bowel away from the disease area so that he can eat again. He was discharged from hospital on 31st May. He was very weak anyway as he hadn’t eaten any food since 5th May but had been on a drip and they were giving him Fortisip to build him up. He has a sore throat, terribly dry mouth and lots of acid when he eats and drinks. It just seems to be getting worse and worse for him. We went to see the doctor on Monday who said he had a fungal infection (thrush) which is likely as a result of surgery combined with not eating for so long and generally run down. He was given some tablets to help with these symptoms. He has extremely swollen legs which is water retention most likely due to lack on food and protein and some water is leaking into the tissues and collecting in the lowest point. He is trying to sleep or rest with his legs elevated and I am massaging cream throughout the day but doesn’t seem to be helping and the tablets he was given to help with this have been removed now as it can cause the issues he is having with his mouth and throat. We went back to the doctors this morning as for the last 12 hours he can’t even drink a glass of water without being sick. He is in bed at the moment resting but he just seems to be getting weaker and weaker. He can barely hold a conversation it’s just so awful to watch. We have two little girls aged 6 and 4 years. When David had all the previous surgeries and when he was diagnosed they didn’t really seem affected by anything they were too young. Our 6 year old now is seeing her Daddy unwell with not even enough energy to read her school book with her. He has lost so much weight he looks so ill. The doctor this morning was bordering on admitting him back into hospital but as his obs were all normal he also offered to increase dose of anti acid tablets and monitor over the next couple of days which was the preferred option for my husband. The doctor has contacted Macmillan in our area who is going to call us within the next 24 hours and come and see us and hopefully give us some support with trying to build David up and get him well again.

The plan going forward for David is recover from this surgery and then start Floflorinox in about 6 weeks time. They are also going to try radiotherapy via the Cyberknife which wasn’t offered previously so that’s a positive.

I need to get him back on his feet and eating again. Has anyone experienced this acid reflux as it’s this that seems to be making him sick and stopping him from eating? Also what are your experiences with Floflorinox? David had 2 sessions before his surgery in Germany and didn’t tolerate it very well at all both physically and mentally.
Any suggestions on the water retention other than elevate as much as possible?

I keep reading the posts on this site and it’s just awful it really is such a terrible disease. Apologies for the long download of information it just helps being able to talk to people who are going through the same thing and hopefully drawing on your experiences at the same time. I know everyone is different and people react differently to treatments but any advice primarily with regards to his current symptoms would be much appreciated.

Amanda. x

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Re: Newly Identified Tumours One Year on from Whipple

Postby jay » Wed Jun 04, 2014 7:00 pm

Just want to let you know Amanda im thinking of you all, sending a massive cyber hug

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Joined: Mon Jul 08, 2013 8:29 am

Re: Newly Identified Tumours One Year on from Whipple

Postby nikkis » Wed Jun 04, 2014 7:03 pm

Hi Amanda,
I am so very sorry to hear all this has happened to you and David,it sounds a nightmare. My husband had folfirinox last year after surgery and it is tough, but worth giving a go. It brought his tumour markers right down, and improved his symptoms for a good while.

He has also really struggled with acid reflux at times. He now has 2 omeprazole tablets in the morning and 2 at night, which I make sure he has an hour before food, with no other tablets and we think that has made a difference. He also takes gaviscon after all his food.Also If David has to go back into hospital it might be worth asking if he can have intravenous feeding (called TPN), to build him up. Paul even came home on this as he had such problems with absorption, but it's not always available, and not all oncologists like it, but it has made a huge difference to Paul.

Really hope things start to improve soon. Thinking of you all,

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Joined: Sun Mar 24, 2013 8:15 am

Re: Newly Identified Tumours One Year on from Whipple

Postby J_T » Wed Jun 04, 2014 9:36 pm

Amanda, reading David's journey so far is heartbreaking. Such a young man and suffering so much with this relentless disease.

Usually when you are reading stories such as you see on this forum, but you are not affected, you think how awful, but we here, know what it is really like, awful doesn't begin to cut it. When you have finished sharing your latest update and you go back to the person you love, you are there with them, and dealing with and sharing the incredible unfairness of it all. The physical and the emotional toll seems unbearable at times.

You seem very together and determined, David is lucky to have you. I hope you succeed in building his strength up once again, and hope he can manage 'The Fox' and you are able to share many more wedding anniversaries, together with your children.

Julia x

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Joined: Fri Mar 15, 2013 5:43 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Cathy » Wed Jun 04, 2014 10:38 pm

Hi Amanda

I'm so sorry, you must feel devastated. It's so awful when you see someone you love deteriorate quickly when you feel so helpless.

Can your GP offer a diuretic to help with fluid retention? I haven't heard of acid reflux causing sickness before, but pain yes. Is he on lanzoprazole for this?

Re folfironox, there is loads of stuff on this site about that. Both Nikki and Julia (J_T) have written on their threads (see Folfironox starts and Wednesday and other stuff) as well as Steve (Slewis7313) and Rob (RLF). My partner also had folfironox but I mostly posted on other people's threads but pls ask if you need specific advice nearer the time. Different people react differently to it.

Best of luck with the return to strength for David.

Cathy xxx

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Re: Newly Identified Tumours One Year on from Whipple

Postby Slewis7313 » Thu Jun 05, 2014 3:28 am

Amanda, I am really saddened to hear developments after such a positive outcome in Heidelberg. As Julia says, this thing really is relentless (a word I find myself using often). As you may recall, I had an unsuccessful attempt at a Whipples in Heidelberg and had been stable until very recently with my marker now at over 2000 after 10 months below 50. Mine appears to have spread to the liver and I am about to have my third session of Folfirinox, so a bit of a newbie with this treatment, but if there is anything I might be able to help with, please shout.

I hope David picks up quickly so you can both crack on with the fight.

Take care


Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Thu Jun 05, 2014 10:21 pm

Thank you so much for your comments and taking the time to reply it really is appreciated. David has had a better day today he has managed to keep down Fortisips and also managed a bowl of soup with some bread along with lots of water and ice. His legs seem to be causing the pain now with the water retention and are starting to blister. It seems the only advice for this is to elevate and try to keep moving which he is trying to do but very painful. Our Community Macmillan nurse came to see us today and was really helpful. We now have a 24 hour access to the team for any concerns which is great. She has arranged for a dietician to come and see us to help with the best foods to help David and a Physio-therapist to help with his legs. We now have only one point of contact to all doctors and nurses that we may require going forward.

Nikki, when we went back to the doctors yesterday they increased his dose of Omerprazole to 2 a day which fingers crossed seem to be easing the symptoms. It’s good to know he can have more if needed. It’s interesting about having IV at home. We asked on several occasions if David could come home with IV as the only medical intervention he was having was the fluids but they were adamant that they would not allow him out with IV. I did manage to arrange for him to come out for a few hours so he could attend our daughters 4th birthday party but they even removed the canualr rather than bandage it for a couple of hours.

Cathy, David was taking Furosemide for the water retention but it has been stopped by the doctor has it is not helpful in resolving the fungal infection. It seems that all the drugs he needs do not compliment each other at the same time.

Julia, Thank you for the kind words of encouragement, once David is back to himself we will be fighting this head on but you are right it is difficult, it’s a crazy situation and everyday I wake up hoping it will all be ok and it’s not really happening.

Steve, I remember reading your posts about Heidelberg and how disappointed I was that Professor xxx could not remove your tumour. I am sorry it has now moved onto the liver. This is the cruelty of this disease it can be fine for so long then it just hits you with the next challenge. Hope you continue to be able to manage the treatment going forward you have been strong.

All we can do is keep on fighting and trying to find the best way to deal with the dreadful situation we are all faced with on this forum. We continue to remain positive that we are the ones that can beat this cancer and as long as we think like that we can move forward onto the next step in this challenging journey.

Wishing everyone all the very best and thank you.

Love Amanda .x

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Joined: Tue Dec 03, 2013 5:19 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Annie14 » Fri Jun 06, 2014 1:02 pm

So sorry to hear about your husband and I hope it all goes well! I remember reading your story when my husband was diagnosed and it really struck a cord with me as we too have a young child aged 4 and my husband is a similar age as yours. We will be thinking of you all.

My husband has now had eleven Folfirinox treatments. He has tolerated it very well and put weight back on quickly. The first two days he has hiccups, lock jaw and tingly finger and one third / fourth days he is a big sluggish but apart from that he goes to work / plays golf / plays with daughter just like before diagnosis. He is going to do another treatment and then they will scan him - we hope cyber knife or nanoknife will now be an option but a stable tumour will be good enough for me!

All the best! I'm sure Folfirinox will help!


Re: Newly Identified Tumours One Year on from Whipple

Postby Fifi » Sat Jun 07, 2014 7:10 pm

Didn't want to ignore this post.

Your husband sounds like he is fighting and doing his best to stay strong. He has a lot to fight for. I hope he continues to improve.

Thinking of you and your family.


Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Sun Jun 08, 2014 10:50 pm

Thank you for your replies and kind words. David is feeling a little better today which is great news. He has started to eat small amounts and has managed to keep everything down. The swelling in his legs is getting better. He is still very weak but a massive improvement from this time last week. It really is such a massive relief. I was getting so worried and felt so helpless watching him in so much pain and not being able to help or stop it just praying that each day we woke up we would see an improvement. Small steps but in the right direction.

Love Amanda.x


Re: Newly Identified Tumours One Year on from Whipple

Postby Fifi » Sun Jun 08, 2014 10:55 pm

Excellent news Amanda.

Has his appetite improved?

Thinking of you all.

Leila xx

Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Sun Jun 08, 2014 11:15 pm


Yes it has a little. He still doesn't feel hungry but he knows he needs to eat so just grazes thoughout the day on little amounts often. He is still taking the Fortisips too to help with calorie intake. When he was diagnosed we read quite a few books about cancer and made alot of significant changes to the type of food we eat. He finds it difficult to eat some of the products the dietician has suggested to build up his calorie intake as they are the types of food he hasn't eaten for nealy 2 years.

Amanda. x

Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Sun Jun 08, 2014 11:39 pm


I am really pleased that your husband is getting on well with the treatment. It’s great that he is able to enjoy some of the things that he did prior to starting it.

How is your little girl? I guess like our daughters they are too young to understand what is really happening which is a good thing. Molly skips around in her own little world oblivious to it all which is a good thing. Jessica who is slightly older, still has no idea about it all but is just more aware of the length of time Daddy is in hospital. They have made up a little song about the ‘Doctors and Nurses making Daddy’s tum tum better. It’s so cute.

I wish you all the best for the final cycle and for a positive result when your husband has his scan following is last treatment. Please let me know how you get on.

Take Care

Amanda. x

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Joined: Fri Jul 05, 2013 11:53 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby belgrade » Mon Jun 09, 2014 12:20 am

So glad to hear that David is improving Amanda. Love and good wishes to you all.

Hilary x

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Re: Newly Identified Tumours One Year on from Whipple

Postby Annie14 » Fri Jun 13, 2014 7:39 am

Aww how cute Amanda! Perhaps the kids could all release that song to raise money for the charity ;-) I would certainly buy it! Yes, she is also totally oblivious other than knowing he has "a wire" every fortnight to fix his poorly stomach. She is only four and given he tends to go to work most days she hasn't noticed much change to our daily routine! Unfortunately she broke her collar bone yesterday on holiday (first day) so she's the current patient in our house and enjoying being spoilt rotten!

I'm going to have to set up a hospital in my own house at this rate ;-)

Hope the folfirinox goes well - Jim loves a takeaway the nights he has is! Never feels hungry until he starts eating though and then he clears his plate. Always gives him something to look forward to and a reason not to go to bed so early he can't sleep!