Dad's PC - Stage 4 with liver mets

[cmorris34]

Hi everyone,

It's my first time posting here though have been scrolling through the forums for some months now. Thank you so, so much for this space - it has been so helpful to read about other families' experiences and has made this whole experience feel much less isolating. Just to introduce myself - I'm C, I'm 21 and living with/caring for my dad, who is 74 and was diagnosed with stage 4 PC at the beginning of March.

In dad's initial biopsy, the doctors discovered a secondary tumour on the omentum which was removed there and then. When the diagnosis came, we were made to feel relatively at ease by a consensus that things were bad, but moving very slowly. I stayed at university for the remainder of the term and came home just before lockdown started.

In the middle of May, he had a week of CyberKnife radiotherapy in an effort to immobilise, or at least shrink, the tumour on the pancreas. Chemotherapy seemed off-the-table for him - all of the vulnerabilities of COVID infection plus a history of serious heart problems meant it just wasn't sensible. It went well - he was fatigued for that week, and struggled a bit with food, but Creon has been helpful and the last few weeks have felt more-or-less normal. It seems like a great treatment route for patients without secondaries.

Today, however, it has transpired that that isn't him. Last week's CT scan shows that CyberKnife was successful in shrinking the first tumour, but revealed a new secondary on the liver which he was told about in an appointment with his oncologist this afternoon.

Now we're really stuck. His options, we have been told, are either to 'ride it out' until the end - which sounds like 5-6 months away at best - or to have chemo, as infections are down and it is being phased back into use. Of course, the chemo itself might well be lethal for him. Right now, his symptoms are limited - some pain and digestive trouble, but not much else, and certainly nothing debilitating. But chemo, I imagine, would really make him unwell, and I fear for the shell of himself he might become -- and the speed at which that might happen. I know this is a path that lots of you will have travelled with your loved ones and I wonder what your experiences are with those who are already medically vulnerable in other ways? Is it worth the risk for another handful of painful months? We have a week to decide which route to take.

I had really thought we had all adjusted to the reality of our situation -- but now it really feels like the decline is close, I am deeply, deeply fearful for what the months ahead will bring. Foolishly, I'd started to think I might be able to go into my second year of university as normal before anything got too scary -- a blissful ignorance, I now realise.

Thank you all for being here - I hope you're all coping as well as possible in this tricky, uncertain time.

[PCUK Nurse Jeni]

Hello c,

Welcome to our forum.

I am sorry that you find yourself on here, and to hear that your family has been affected by pancreatic cancer, and that this has been compounded by the Covid 19 pandemic. It seems as though things have been going relatively well, as you say, until recently.

C, do you know what chemotherapy your dad has been offered? And would you say that at this point, your dad is relatively well in terms of day to day living? For example, up and about more than 50% of the day, able to wash and dress himself, able to take a bath or a shower himself, etc...?

If hes pretty "fit" otherwise, then chemo would be easier for him to tolerate depending on what it is.

I would be happy to speak with you tomorrow if you think it would be easier to chat this through - less back and forth this way.

If so, please don't hesitate to ring through on the number below in my signature.

kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Borobi]

Hi C.

Sorry to hear about your dad. It’s a tough thing to deal with.

My partner was diagnosed with pancreatic cancer 18 months ago and now has liver mets. He had 12 cycles of Folfirinox last year and started on Gemcap a couple of months ago. Obviously each person responds to chemo differently, but he’s not had much in the way of side effects on either of these regimes. Slightly changed appetite, bit of nausea and tiredness but nothing much. Whereas 10 years ago he had CHOP chemo for a different cancer and it wiped him out for a week. So you only really know how someone will react if they try it. He’s 67 and apart from the cancer is in good health.

Good luck.