Pancreatic cancer

Affected by pancreatic cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Confused...

Daddysgirl2019
Posted by

Hi all, my dad was diagnosed with cancer in early 2017 and had the whipple in April 2017 followed by 6 months worth of chemo to blast a few cells they couldn't get in the operation. He has lost a lot of weight and is very weak and in quite a bit of pain; we found out the cancer was back in the lymph node surrounding the pancreas - this is classed as a recurrence and is localised for the moment. They have offered him chemo again which he is going to take, but he was also referred to the hospice for pain management and it seem they are of the impression he has months left? 

Here are my questions...

Why would they offer chemo if he may only have months left to live? 

How would we know if he is "dying"? 

What are the chances chemo could blast this recurrent cancer? 

What could we expect near...the end?

I am feeling very confused....any help/advice from anyone going through the same or similar or anything would be greatly appreciated.

Beccy x

Splodge321
Posted by

Hi Beccy

Welcome to the community. I’m so sorry that you’re in this awful situation. 

Can I ask, have you attended your dads meetings with his oncologist or has your dad just told you what has been discussed? All of your questions are completely normal but they need to be asked to a medical professional who can give you honest answers. I was very lucky in that my mum wanted me to go with her to all of her appointments and gave permission for everyone to speak to me (I’m the sort of person that can deal with things if I have the facts). 

The most useful person to me was my mums Macmillan nurse, she was always honest and frank and a huge support to us all. 

If your dad is happy for you to speak to his doctors or specialist nurse then do so, if not I would suggest you call either the Macmillan support line or PCUK. They will be able to give you more answers medically than we can, what we can do is offer you support. This forum is a great place to let everything out and get things off your chest. Much love to you and your family x

Kate 

Squeaky
Posted by

Hi Beccy

Just saying hello. Splodge has written a very helpful reply. As she says we don’t have medical knowledge but we can support you. I always found a chat with the nurses at PCUK very helpful.

Squeaky

Needing friends
Posted by

Hi there, I know exactly how you feel. Partner had whipples last November but refust chemo follow up. Great for the first few months. And then his appetite deteriorated to the point where  he is on shakes, procal, fortijuice and just been prescribed ensure deserts. He has been told to aim for 6 a day, will be very lucky if he takes 2! A couple of months ago he also had a melanoma removed and the genetics department have been in touch as it could be melanoma pancreatic syndrome. Went to gp yesterday ashe is so wek and he has lost another 4kg. She told him food will never taste the same again it is something he must do to live. She also asked if we had a palliative care team, I don't think my partner understands the significance of that word. He just said no. This is the first time this word has been mentioned and when you look at him it isnt good at all but the oncologist says his last scan is clear but we are waiting for another as his blood markers are gradually rising. I think I would like to know what the outcome is, it would help me deal better with his weight loss as I feel so guilty about it when there doesn't seem to be a reason. The trouble is that I don't know how partner would handle the news, I feel he would just give up. Asking him for permission to speak to doctors alone I think would also anger him, his mood is low and temper short because of his abdominal pain which seems to be put down to digestive issues. He was told in the past that a recurrence could not be cured but treated. I hope you find answers, I wish I could to. Sorry if this sounds weak. Hugs to all pam x

Daddysgirl2019
Posted by

Thanks Kate. He has been going to appointments with my aunt she is always around and they are very close. I work full time and have 2 kids, my husband also works. We would both be able to go to appointments if needed but he seems to arrange them and my aunt always offers to take him. 

My mum and aunt have been good at speaking to his consultant but it still seems to be fairly vague information - as it happens, he had an appointment yesterday and they have advised he may have between 2 months and a year left, not sure though if that is with or without the chemo he is due to be starting. I still feel confused as to whether he is currently "dying" or not....but maybe that's me being in denial. I have known from the start that pancreatic cancer has a high rate of recurrence and low survival statistics. Doesn't make it hurt any less...

I would like to access counseling, if you can signpost me that would be really helpful. I feel I need to start processing all of this now before the inevitable happens ...I have 2 kids under 3 and can't be falling to pieces. 

Thanks so much for your reply and your thoughts xx

Daddysgirl2019
Posted by

Hi Pam,

So sorry to hear about your partner....I think the operation really does put their bodies through the mill and I know with my dad that food never tasted the same since...does your partner take plenty of Creon when he eats? I think with the pains and the general low mood, it can be hard for them to muster the strength to eat...but maybe plenty of high fat food like ice cream? Also maybe look up the food diet suggestions for someone who has had pancreas removed.

All I can suggest is that you keep fighting forward, being there for him and making life as comfortable as possible. Have you got plenty of support? 

Be peaceful,

Beccy

Meg Mac
Posted by

Hi,

My Dad was diagnosed with pancreatic cancer on 1stApril. It’s terminal and my Dad has been having palliative chemo 3 weeks out of 4.

initially I was devouring as much information as I could get my hands on. We knew that Dads  prognosis was less than 6 months, my Dad chose not to know and still doesn’t. I was always looking to second guess when he would pass.  This just fed my anxiety about the situation so I emailed the nurses at pancreatic cancer UK. They told me that when patients receive a timeframe such as this, it is based on averages and many people outlive it.  It should be said that some don’t unfortunately make it that far either.  Dad is now 4 months since diagnosis and  is currently well and things appear to be stable, down to the chemo I guess, but while I know this can change quickly, I have stopped trying to guess when this will be and just enjoy time with him while I can.

An added stress is my daughter is getting married next summer and i’m Anxious about my Dad being there/not being there. Obviously I want it to be a happy day and am worried Dads illness will overshadow the day. Nothing I can do about it but it doesn’t stop me worrying in my darkest hours.

the nurses told me that tumours in older people are often slow growing so chemo might help your Dad, incidentally my Dad has tolerated it very well and has an off day, the day after treatment, otherwise he lives life as he did before.

i totally understand how you feel, you think that if you are prepared yourself, you can be stronger to help those around you. Try emailing the nurses at PCUK, you can keep in touch with them until you’re comfortable.  I hope you find the help you need.

sending virtual hugs 

mm

kevatvinegarhill
Posted by

Hi Beccy

of all the things that have happened since whipples and now during chemo one of the toughest 'battles' is finding food that tastes o k. after many months we are still experimenting and I hope that one day my favourite cheese and onion sandwich will be a pleasure to eat again.

tonight its chicken tikka for dinner and although I've never been a big fan of spicy food  that type of medium flavour does hit the spot. I've also got a regular supply of assorted flap jacks from a relative in Devon and they are delicious

we'll keep fighting the good fight

Best Wishes

Kevin

Squeaky
Posted by

Hello all

One of the things that I have learned from being on this forum is the experience of PC is very variable and any time frames are, indeed, averages. My husband was diagnosed in early stages and had the Whipple but the cancer recurred quickly. He then had chemo which probably didn’t make much difference. However, what we tried to do was live one day at a time and not think too far ahead and that worked for us.

Squeaky

Needing friends
Posted by

Hi beccy, yes he takes plenty of creon with whatever he eats. He simply cannot tolerate more than a few mouthfulls of anything, and these few mouthfulls will be more than he can handle for most of the day. Yesterday, even after the GPs stern talk, he had a handful of cornflakes, one procal and a plum and apple. That was the maximum he could cope with and although he knew he should be concentrating on taking the prescribed shakes etc he said he just couldn't. Last Sunday I made a chicken dinner and put tiny amounts on a plate, he ate a few carrots and a mouthful of cabbage. I have tried to think of everything, even cooking things when he doesn't want them hoping the smell of the food will tempt him, but it doesn't, it makes him recoil in horror. Will see how things go for a couple of days and then phone and give gp an update. Thank you for your support, I hope things are OK with you xxxx

Daddysgirl2019
Posted by

Thanks for your reply, 

I will definitely email PCUK, thanks for that.

Well my dad seems to have defied odds up until now, having been eligible for the operation to begin with, then having 2 years cancer free, then the recurrence and he's still here so far. He is getting very tired though and weak and he just seems to be disappearing every time I see him...He spends a lot of time in bed and is on a lot of pain meds. He seems to be fading away....I can't help but feel he's getting close to the end....he seems really at peace with everything, but I wonder whether that's because he may have given up because he's been told it's palliative care now....

I just don't know what to think :-(

Thinking of all of you going through the same, 

Beccy

Daddysgirl2019
Posted by

Hi Kevin, 

My dad seems to enjoy sweet treats the most - he likes porridge and cream and ice cream and cheese and biscuits. I say just enjoy anything and everything you can, just try and keep that weight up!

Sending some thoughts and prayers your way, 

Beccy

Splodge321
Posted by

Hi Beccy

sorry for the late reply, I haven’t checked in for a few days. I hope you have the answers to your questions now. When it comes to  counselling I’m not sure but would imagine your GP would be a good place to start. As for falling apart I’m sure you won’t. It’s very strange but when the time comes you will find a strength you never knew you had. I don’t know where it comes from but it’s there. I couldn’t imagine anything worse than losing my mum, she was a huge part of my life and I was devastated at the thought of her dying but, even though I miss her terribly my world hasn’t stopped turning. I think of her every day but it’s with a smile on my face at all the wonderful memories I have. 

Keep popping in here especially for a rant as it does help and there are some very kind people who can empathise with your situation. Xx

Kate