Pancreatic cancer inoperable - how long

[Lushmetender]

DF is 75. Diagnosed with pancreatic cancer. Biopsy was inconclusive but big changes between biopsy and ct scan 4 weeks later. Told chemo won’t make any difference and he’s just lost my mum so don’t think he wants any messing seeing what she went through. Wheels have set in motion for assistance in his local town at home. He’s dotting between his house and ours while he is still able. Has constant dull pains which keep him awake despite meds. He doesn’t think he’ll see past Easter. Saw my gp and she warned it will be v quick so get all affairs in order which he is doing. He’s lost 4 stone in a year. Anyone experienced this and how quick was their deterioration. We have a couple of things planned in coming weeks but I was wondering what to expect and what is it that usually causes the issues eg tumours on vital organs etc? Would love him to have a little quality time but we are just doing our usual routine. Kids don’t know due to having just lost their granny. Any insight would be helpful

I am so sorry - I have known 2 lovely (unrelated) people with this diagnosis. One in 2000 and the other in 2017. Both fairly fast once diagnosis confirmed. One had surgery, the other chose not to. It is very fast and I am not sure that treatment has improved life expectancy at all over the last 20 years. Hopefully improved quality of final few months.

There has been some lovely supportive advice up thread. I hope you can spend some quality time together.

My FIL died of this about 20 years ago. He was given 6-12 months but lived about 2 years from diagnosis, but the last 6 months were just awful and barely counted as living. It was horrible to watch, he was in his 50s, exercised lots and ate very healthily.

my wonderful uncle was less than a month from diagnosis. I’m sorry your family has to deal with this, OP. May you be strong in the coming days and weeks.

Sorry to read this.

It is definitely cancer? My Dad, then 85, went into hospital with pneumonia and bright yellow.

Diagnosed with pancreatic cancer from scans and x rays. Too ill for biopsy. Surprisingly he got well enough to come home but was given approx 3 months.

6 months later he’s still alive albeit with parkinsons and COPD. (Which he had before his pneumonia) Turns out pancreatitis can look v similar to cancer on x rays.

Lived for another year, died of COPD.

Social services, Macmillan, hospice at home all very good.

I'm very sorry op. Such a cruel disease, my great aunt died 4 weeks after diagnosis. It was terrifyingly quick but she was only really in pain the last few days but with the right meds died peacefully.

Soo very sorry OP, please count every day as a blessing, get all affairs and favourite meals, trips done now before those last days come.

I have lost two very family members to the disease. Was primary care giver to one.. so have seen the good, bad and ugly. Cherish the days make a list of friends your DF wants to see, places to visit. Take treasured family photos. Both

Thx everyone. It’s the uncertainty of it all. He found out he’s terminal on 13th December so been about 6 weeks. Dr was 99.9% sure.
Biopsy was inconclusive but they saw loads of changes in other major organs (presumably metastasis). They offered to repeat but as he’s chosen no chemo he doesn’t see the point. He’s chosen to stay at home this week saying the hospice nurse coming today. She is supposed to be bringing food supplements as his appetite is waning. Think oral morphine controlling his pain at night. My dd friend has covid so probably best he keeps away until we’re sure no bugs in house. I don’t feel I’m quite here! Was ok for a while but I’m struggling to care about work - think I need to take some days off. Hoping we have more quality time as we have a couple of things planned in March.

So sorry my love.
My mum was 8 months with chemo. I told her to have the chemo to control the sickness. Which it did. But she had spinal mets and the pain from them was horrific. I still think i told her the wrong thing.
I would ask work to give you some time off if you can and get the local hospice involved now.
We are all here for whatever questions you have. Xx

I'm so sorry. I lost my Dad to this the day before he was due to start chemo. It was about five months from diagnosis.

He got very poorly very quickly with little quality of life. Couple of things I just wanted to say, which we found out about after paying for a consultation with a top pancreatic cancer specialist.

The first is stents - they can put in simple little stents that ease a lot of the symptoms. My Dad had two, and each time felt a lot better and got some relief.

Pancreatic enzyme replacement therapy - www.pancreaticcancer.org.uk/information/managing-symptoms-and-side-effects/diet-and-pancreatic-cancer/pancreatic-enzyme-replacement-therapy-pert/how-do-i-take-pancreatic-enzyme-replacement-therapy-if-i-have-pancreatic-cancer/

Ascites fluid - if he gets a buildup of this (swelling in the abdomen) speak to a Dr about possibility of getting it drained. Otherwise it can cause non stop vomiting as seen in my Dad.

@Lushmetender So sorry to hear about your Dad.

My friend just lost her DFIL to this. Sadly (or possibly fortunately) it was about a month from diagnosis to his death. About half of that he was 'ok' at home, but the final fortnight he was very unwell. He didn't want chemo (& tbh his body probably wouldn't have coped with it & it was highly unlikely to make him well enough to get any enjoyment out of life). He was a lovely bloke, very sad.

I'd bring any event forward that you can IF he'll enjoy it

But sadly everyone will miss him being at future events & you can't cram everything in, so consider how much he'll enjoy being there & not getting too wiped out.

Take car 🌷

The problem with pancreatic cancer is that it is often well advanced before it is spotted and therefore too late for treatment. My dear mum was 6 weeks from becoming ill but it wasn’t confirmed as pancreatic cancer until after she died . Enjoy your time with your DF x

I’m so sorry @Lushmetender

Mum had about 4 months from her initial hospital visit. She declined quickly, and spent the last few weeks in our local community hospital pretty much sedated.

I couldn’t believe it could be that quick, and wish I’d done so much more in those last months.

Oramorph helped with her pain, and she too was using those meal replacement shakes from the GP as she rarely wanted to eat. Macmillan nurses were a help too.

Spend as much time with him as you can, and look after yourself as well

my dad recently died from it - he was diagnosed Dec 2019 and died October 2021. They said he'd see 12 months, maybe 24 if he was lucky but not much beyond that - he was 22 months. His was inoperable but he had chemo.

I think sometimes it can be slower in older people as I also had a friend who was diagnosed and died within 6 weeks but he was in his 40s.

I have a friend who ran the London marathon in April and died in July. He was in his thirties.

@sandgrown

The problem with pancreatic cancer is that it is often well advanced before it is spotted and therefore too late for treatment. My dear mum was 6 weeks from becoming ill but it wasn’t confirmed as pancreatic cancer until after she died . Enjoy your time with your DF x

Sadly true. My DF went to the GP several times over about 6 months with symptoms but wasn't properly diagnosed in the earlier visits, and by the time the GP twigged what it might be and made the referrals, it was very late in the day, just a few weeks from proper diagnosis to losing him, diagnosed far too late for any chemo etc to extend life.

An update - DF still here after terminal diagnosis 13 December 2021. Said he’d be lucky to see Easter. Easter is now passed and he is bed bound and unwell. Our issue is getting help at night. Marie curie nurses are v busy so me and DH sharing overnight duties. I have a sibling who thinks he’s ok to be left overnight and despite saying they’d take their turns are doing everything but! Trying not to fall out over it but seems they think care nurses coming out morning and night is sufficient. Anyway calm. I’m just wondering what to expect now. DF is sleeping - barely eating. Getting confused over meds. Dehydrated. Starting to have trouble swallowing.

Hope you're coping okay OP. I lost my mum in the June then my dad was diagnosed out of the blue with terminal cancer in July, and passed away 4 weeks later. It's horrible to go through. I'm here if you need any one to talk to.

@Lushmetender big hugs op, do you have a plan for hospice to step in or move into a hospice? Do you have a pain relief pump? How lucid and verbal is your Dad?

Eating becomes very sporadic/ non existent & you will watch your dad reduce before your eyes. Key is to keep an eye on fluids to reduce pressure on kidneys/ liver. Some Drs recommend ensure as nutrition, but honestly provides little comfort and tastes foul. Keep an eye on the essential health & well being (brush teeth to freshen dry mouth/ mouth rinse or hot flannel to freshen up the face etc) / fresh change of pjs etc.

start to arrange family friends to visits to share conversations and reminisce .. energy levels drop considerably.. then you may see a surge of energy - “a good day” closer to the end, then pain escalates again and finally meds take over. 🌹🌹💕

Thx- here tonight and hospice admittance initiated.
could take a few days but things easing up a little and less on waiting list. 5 days ago I could help him to loo but he has no strength today. Been wanting to poo all day and did a
good one but v phlegmy. He had visitors today but he’s v unsociable-asking me “if they’ve gone?”. Flipping hospital bed alarm going off so had to get nurses out - cpr thing came out so bed getting no air.
hoping to sleep tonight but can tell he’s uncomfortable! Going to try and sleep now

Thinking of you. Those nights are lonely, a bit disoriented and surreal.

It can be hard with siblings - often they are in denial. I had no problem taking their shifts and glad to have every precious moment.

I hope these times are gentle.

I’m so sorry you are going through this OP. Sending you a handhold. Hope your DF and yourself have managed a little sleep. Xx

Thinking of you.

@Lushmetender
Handhold
Your Dear Father is very blessed to have you as a daughter. He may call out to your mum or his mum like my father did. It is a honour to be with someone when they die...you are giving him the best gift a parent could possibly hope for...your siblings will probably have deep regrets for not being there..they will have to live with that.

We had a family member go 2.5 weeks after initial diagnosis. Once it's too late it can be very fast :(
Sorry you are going through this.

hope you managed some rest overnight..🌺
good to set wheels in motion with Hospice.

The team can assist with lactulose etc to help with internal discomfort. It is a very challenging time all round.. the time although routine is special and you are an amazing comfort and wonderful daughter to be there.

we arranged visits - but managed on strict time slots as the visits can drag. Those who reply care will understand. Short visits 20mins or so are best.
Dm me if you need..