Newly Identified Tumours One Year on from Whipple

[Amanda J]

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

[jay]

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

Jayne

x

[nikkis]

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,

Nikki

[J_T]

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.

KBO

Julia x

[Cathy]

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

[Slewis7313]

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

Steve

X

[Amanda J]

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

[Annie14]

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!

[Guest]

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.

xx

[Amanda J]

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

[Guest]

Excellent news Amanda.

Has his appetite improved?

Thinking of you all.

Leila xx

[Amanda J]

Leila,

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]

Annie,

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

[belgrade]

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

Hilary x

[Annie14]

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!

Xxx

[Cathy]

He Anne and Amanda

So pleased to hear that both your husbands seem to be doing well and seem to have a lot in common - that can be a very supportive thing.

Take care

Cathy xx

[Amanda J]

I can not comprehend the devastation this thing is causing to our beautiful little family. David has struggled since the surgery in May but thankfully we did mange to go to our Nephews wedding in Cyprus at the beginning of July. Our daughters were Flowergirls, so it was really important that we made the holiday. Our GP, Macmillan nurses and Marie Curie Hospice were amazing in helping to get us there. The taxi was arriving to take us to the airport at 11.15 and the doctors appointment was at 9.10 to confirm he was fit to fly. We had a lovely time but he did struggle a little on some days. He seems to have a good day where he is up and about and then a bad day when he doesn’t have the energy to be out of bed for long and them his back really hurts. Does anyone have any experience of the upper back pain that can recommend anything to help? The out of hours doctor has just been as David is struggling with abdominal pain again. He said it feels like trapped wind. He has not stopped vomiting since yesterday morning. He has a high temp and fast pulse. They wanted to blue light him to hospital but we managed to convince the doctor to give him some medication and I will monitor him through the night. The plan going forward is to get him strong enough to have the Chemotherapy but David is not keen on more treatment. He has had 5 abdominal surgeries in 2 years and says he is sick of feeling sick now and just wants to have some rest from the pain. We have an appointment with the radiotherapy team to see if the Cyber Knife is an option. Steve, I see you on here and so wish my husband had the want/energy to be part of this forum as I am sure it would help him in accepting the next proposed treatment for him. I do feed back the positives but he has mentally blocked it out. He had 2 sessions of it last year prior to the Whipple and did not tolerate if very well both physically and mentally. We can’t even use the word as it makes him feel agitated. We are planning to take out daughters to Disneyland Paris in the next few so he has that to work towards. It really is the hardest thing to watch someone you love so dearly in so much pain and unable to stop it apart from helping with pillows and position. Well tomorrow is a new day and it’s been 4 hours now since the last sickness so fingers crossed its just a bug he has picked up and all will be fine again.

Wishing everyone all the very best.

Love Amanda. x

[Slewis7313]

It is truly relentless Amanda. It's great to see that David is fighting and that family trips are something to focus on as things hopefully improve (albeit slowly). Now things have settled down with Folfirinox, I am coping really well with the treatment. I am however lucky that to date I have never had any serious issues with pain, other than in the early days shortly after diagnosis.

This place has been such a support and I am not sure how I would have managed without it. We obviously meet many cancer sufferers at the Chemo Unit and Maggies, most of whom compare notes with fellow sufferers, but of course Pancreatic Cancer is so rare, the only sharing I can really do is here. It certainly helps me (and my family).

I hope all goes well with the Disney trip (brings back many happy memories of when we visited with our girls when they were small).

Please take care (both of you).

Steve

X

[jay]

Hi Amanda, sending you a massive, massive hug. My husband had a whipples Oct 2013 and on Tuesday we were told it had now spread to liver and possibly in the site of the original pancreas. Hes waiting to start folfirinox ! He too has severe back pain during the night. It starts at about 11 pm and lasts until 3am. This started Saturday. His onocologist examined his back and said you can get back pain when the cancer has spread! Hes going to phone the nurses on this site later.Hope you all have a good day today.

love jayne

[nikkis]

Hi Amanda,

So sorry to hear David is feeling so rough. My advice, from our experience, is to get him to have whatever it takes to get the pain under control so he can start the chemo which should relieve the symptoms and help him feel better. Paul has found gem and abraxane (not always easy to get on the NHS) easier to tolerate than folfirinox, but I think the feeling is that folfirinox hits it harder. Paul still has regular morphine for the pain, and I don't think you can underestimate the ongoing strain that the surgery can put on the gut and then the cancer and chemo make everything so much worse.

Our local hospice admitted Paul for a few weeks to get the pain and sickness sorted, but he was free to come and go (including for his chemo) while here was there, so as you have those links it might be worth considering. Paul has an electric heat pad that has really helped in the past with back pain, and was also prescribed amitriptyline, which may or may not have helped. I really hope you manage to have a successful trip away with your girls.

Jayne- I am so very sorry to hear your news. This thing really stinks!

Paul had to stay in overnight on Monday because of his shingles, and the pain consultant, who has not seen him since October popped in to see him. He said that Paul was a very sick man when he saw him last, and could not believe he looked so well. He still has cancer, he still has some pain, we do not know what the future holds, but for now our quality of life is so much better. So do not give up hope ladies that things can get better.

Lots of love,

Nikki

[sandraW]

Hi Amanda, so sorry to hear David is struggling, this disease is so wicked, and relentless. My husband, Trevor's, tumour markers are starting to rise again so we know he will be back on treatment soon, he had 6 5FU, and then 6 folfirinox, his last treatment was only in April, so he won't have had much of a break, but we did manage a holiday to Gran Canaria.

We are trying to build some memories for our grandchildren, and are taking our 2 granddaughters to Disney too, in 2 weeks time.

I do hope David gets his pain sorted it must be truly terrible watching someone you love suffer in pain, we are so lucky because, like Steve Trevor is pain free at the moment, and feels well. Lets hope that he can get it under control, as Nicky's Paul did and then I am sure his fighting spirit will return. take care sandrax

Jayne, Trevor had his surgery in September 2013, and 2 small tumours found in his liver in January, I think our oncologist suspects it is also back in the pancreatic bed too but there is nothing on the scan. He told us if the tumour markers rise Trevor will be straight back on treatment, they are up to 846 from 220 6 weeks previously, so that's where we are headed. I hope you get the pain sorted and get on treatment soon and that he feels better, take care sandrax

[J_T]

Hi Amanda, just wanted to my support, small thought that is. I fully understand the stresses and strains this horrible disease puts on everyone and I can well understand David's feelings, he has really been through it. Ray survived only 7 months from diagnosis but later in the process he kept saying 'I hope I feel better tomorrow', it was heartbreaking because I knew it was unlikely but of course didn't say so. Apart from the awful physical side effects, the mental and emotional side is just as great and the thought of yet more treatment must be so disheartening and it must be SO hard for patients to keep their spirits up through the weeks and months of treatment. I am sure and your family are a great support to David. I'm really hoping David's pain gets under control and then he can focus on the next step, whatever that is.

You are all amazing people and its just so unfair.

Wishing you all strength and love.

Julia x

[jay]

Hi Amanda, hope things have improved. Husband tried tramadol last night for the back pain and it helped. He had them left over from the op. He did check he could take them yesterday. If its a nerve getting trapped opium based pain killers wont work. The nurses on the site are amazing. He is now getting pain in his stomach after eating at night if this doesn't settle im contacting his surgeon for advice, as your paul had a blockage.

Take care Jayne x

[jay]

sorry Amanda, your david ! x

[PCUK Nurse Jeni]

Hi Amanda,

I would agree with Nikki - it may be the best way to get this pain under control is to be admitted, preferably to a local hospice. The reason for this is they can monitor it and change things quicker than if out in the community, where its a bit more of a delay. Whereas, at the hospice, they have specialist staff who can treat all symptoms, including sickness, and titrate pain relief in a more controlled environment.

Also, if it is not responding to opiates (much of the nerve related pain in PC does not), then they can instigate these types of pain killers quicker also.

If you can give this some consideration, it would be a way forward. Just to note, hospices are routinely used in oncology for symptom control, and it does not mean "no active treatment", as this is a common misconception by some people.

Kind regards,

Jeni, Support Team.