Ca pancreas. Stage 4

Hello. My son was diagnosed with pancreas cancer at Christmas when he became acutely jaundiced and was admitted for emergency common bile duct stent. Then it got infected and he developed sepsis.  He had had chronic diarrhoea six weeks now and lost about 50% of his body weight. He is currently in the Royal Marsden   He has had a duodenal stent put in and several medications prescribed to improve his absorption . So far nothing has helped and he is depressed and angry.  He has spots on his liver and stomach lining so it’s stage 4. He was treated for 18 months as having IBS after tests and scans ruled out bowel cancer. Initial symptoms were back ache abdominal pain on eating and acute acute constipation. The pancreatic tumour was completely missed by the gastroenterologist treating him and had reassured him he categorically did not have cancer. This in response to his own instinctive sense that IBS as a dx did not fit and continuing weight loss.  He is in Fentanyl but pain is not controlled. My feeling is he does not have much longer. Does anyone have any similar experiences? Is there any hope for an improvement to buy him more time?  He is only 50 and has children aged 7 and 4 

  • Hi, my Dad was diagnosed with pancreatic cancer in Sep 2020, had an operation and the tumour was successfully removed. He then had 'mop up' chemo for 6 months but unfortunately was then told that it had spread to the liver and spleen. Further palliative chemo didn't work so nothing more could be done and it had spread further. He told his oncologist that he would like to be informed of any clinical trials and in February was told that he may be eligible to be enrolled on a trial available in Manchester. Throughout March he spent lots of time in Manchester (we live in Birmingham) going through extensive, gruelling tests and began the treatment on the Wednesday but unfortunately passed away on the Friday (nothing to do with the trial treatment, but complications from the cancer). I was just wondering if your son had expressed any interest in clinical trials? It was what kept my Dad focused for a long time and it gave him some hope. 

  • Hello, sorry to jump on, just wanted to ask how things were for your Dad as time went on, after the palliative chemo didn't help? How was he day to day, what were the signs and symptoms that he was becoming more unwell?

    We are in this situation at the moment and any real life experiences are helpful.

    Thank so much and so sorry to hear about your Dad xx

  • Hi, I'm so sorry to hear that you're having to face this with a family member too, it really is awful. For Dad, the palliative chemo stopped in January and up to that point and actually for a while afterwards, he was still upbeat, still wanting to come for walks etc. However, the walks started to become more difficult and the main thing was that he was sleeping a lot more. Dad was always up and about first thing, he never wanted to waste the day but when he got ill he would sleep a lot in his chair. After his treatment stopped the tiredness got worse and Dad started to sleep on the sofa in the daytime. He also started to feel more sick, even though he was only physically sick a handful of times. Although he didn't let on to myself or my sister, my Mom told me that he had said that he felt depressed. He developed blood clots in both lungs which ultimately is how he passed, as it caused a pulmonary embolism so, although he had deteriorated quite a bit and I don't think he would have had much more time, we didn't see the full extent of how the cancer perhaps would have progressed to the point of end of life. I hope this helps a bit? Xx

  • Thank you. I'm so sorry, I appreciate you telling your story.

    My Dad also completed his palliative chemo at the start of the year, but is still with us, though is tried and now on morphine medication. Otherwise, his eating is variable and he can only manage minimal tasks and trips out. 

    He is now under the palliative care team and awaiting what will likely be his final three monthly scan, at least this will help to determine where the pain is coming from. After that, he wants any medical input to be the bare minimum as he's sick of it after three years!

    Its very hard to say how long he has left, but he has had a little downhill turn of late. He's incredibly stubborn so who knows!

    I hope he's with us for a bit longer, doing as well as he can. He's only 65 and was fit and healthy prior to this.

    Its heartbreaking and its hard to concentrate on other things.

    Thank you again x

  • Our stories sound quite similar. Your Dad is 65, my Dad was 68. Both finished palliative chemo in January and both were fit and healthy before this awful diagnosis.

    I hope your Dad's scan comes around soon. My Dad was told after the chemo stopped that there would be no more scans. The only reason he had them during March was due to the tests for the clinical trial. The fact that your Dad is still fighting after 3 years is quite phenomenal. Had he had the whipple procedure previously?

    Do you live close to your Dad? I live 5 minutes away from my parents so I saw him very often and would text/facetime multiple times a day, however his texts got less and less over the last few months.

    I hope that you are coping with things OK. It can become so overwhelming sometimes can't it, so if you ever need anyone to talk to, or offload to, feel free to get in touch xx

  • Hi again

    Thanks for keeping in touch.

     No, unfortunately I'm an hour away from them, which makes things tricky. I have three young children too, all with SEN and my partner works 12 hr shifts- so as you can imagine, getting to see them needs to be planned and isn't easy. I'm an only child so there's nobody else who can help out. I see them every 2-3 weeks, but ring them most days to see how they are. Trouble is, they close rank a little bit and can be very stubborn, so getting clear answers from them takes alot of work and they get shirty, if they feel I'm 'interfering!' Dad is good at burying his head in the sand, whereas I prefer facts and pushing for some info and answers!

    I dared to call the cancer care line a month or so ago and that led to palliative care becoming involved- it hadn't happened until then as Dad refused it-' I'm not that ill' -  but I think they are now glad as they can apply for some needed and deserved benefits and a blue badge. Plus since he now has pain, this can be managed.

    His long awaited and delayed scan finally happens on Mon and we find out the lowdown on the 16th May. Then that'll be it. I'm glad he's having it, as hopefully it'll confirm where this chest pain is coming from and if/how the cancer has grown and spread. Otherwise we are left guessing and that adds to the stress.

    Once that happens, I think it'll be handed over to the palliative care team fully.

    Yes, he's doing very well given his prognosis- I know many people become ill and pass away quite quickly- but I have to say, we spend our time in a worried state and that isn't good for the nerves or mental health!

    He had the whipples op back in 2019 followed by Folfirinox and some rest time before it reared its head again. He didn't know, but it showed up on scans and palliative chemo made no difference. Since then he's had no active treatment and his health has gotten a little worse, but he is coping relatively well. We know its just a matter of time though before it gets worse. He has stable kidney cancer, which is unrelated so this is monitored on the scans too.

    Thank you for your kindness, I'm on the waiting list for a bit of counselling with mind- no dates as yet.

    Trying to keep strong and act normally is tough, esp now he isn't as well as he was. But, being like he is, he hates fuss and talking about it too much, so we have to carry on as normal!

    Its nice to have a chat with those who know where you are coming from and have personal experience, so thank you.

    Sorry to waffle on! No doubt I will say hi again and let u know when we know more, if you don't mind. 

    All the best xx

  • Hi, 

    It was my Dad’s funeral yesterday so that was really difficult but I think we did him proud.
    I feel your pain. My Dad was very protective, so whenever we asked him how he was, he would always say he was fine and also, when others asked, he was very good at changing the subject. I’m very much the same as you, in terms of wanting facts. Even if it’s going to petrify me, I’d much rather know exactly what it is that I’m dealing with. 
    Palliative care were great with my Dad. They were very keen to emphasise that them being there did not mean ‘end of life’ but that they could help with lots of different aspects of his care. Also, even though Dad wasn’t seeing his consultant any longer after they stopped palliative chemo, the nurses were still feeding back to the hospital and asking questions on behalf of us, if they were unsure themselves.

    I will be thinking of you all on Monday and hope your Dad’s scan goes as well as it can do. It always felt like it took ages for results to come back for Dad. Has your Dad been checked for blood clots at all? I’m just wondering if the chest pain could be anything to do with something like that. It could be down to a number of things and the scan will show up anything untoward anyway, but I’d feel awful if I didn’t mention it to you when something could hopefully be done about it.

    Also, would your Dad be interested in taking part in any clinical trials at all? I know it’s not for everyone, but it gave my Dad something to strive for. Just a thought.

    Counselling is something I’ve thought about too. I did speak to someone online a few days after Dad passed which did help a little. I hope you get to speak to somebody soon. 

    Don’t worry about ‘waffling on’ at all! I’m here anytime you need to chat and I really hope you get some answers soon xx

  • Hiya, thanks for coming back to me.

    Oh gosh, I'm sorry, no doubt the funeral was very emotional, sending love to you.

    Thanks for your suggestion- I think Dad wants some time off from any treatment- he's had so much over time and is weakened by it now, so I really don't think he'd want to participate in a trial. Driving is more difficult now and travelling any particular distance, plus my mum doesn't drive so its not straightforward.

    The long awaited scan is tomorrow- I forgot that its bank hol weekend and he gets the results on the 16th.

    Palliative team take over after that- he doesn't really want the scan as he knows it'll only highlight more bad news. From our perspective, at least we can identify the source of the pain and see where we are at.

    No he's not been checked for clots- though this is a possibility. Fingers crossed the scan will pick this up if its there.

    Sending love to you, you must be worn out and upset from the grieving and the funeral, its hard to put into words. 

    Thanks for your kind words and listening!

    I'll let you know when we find out more.

    xx

  • Hi,

    I completely understand that trials are not for everyone. The travelling did take it out of Dad, though it was something he desperately wanted to try so we were fine with that. It’s got to be up to every individual and how they feel.

    Thank you for sending your love. It was very difficult but we feel it was a ‘lovely’ send off (if something like that can ever be lovely!)

    I will be thinking of you, your family and especially your Dad tomorrow, keep in touch and if you need to talk, you know where I am xx