recurring PC

Yes us! My husband had whipple 2017 then gem/cap chemo, recurring in 2020. They've just stopped fulforinox as he's struggling with neuropathy. My husband is 45, he's mainly well. Bowels aren't great, has intermittent pain episodes. Feels unbelievable that he's so unwell. Sending love 

Hi, hows your hubby doing?

Dad had a scary week about a fortnight ago, when he contracted sepsis and was in hospital on IV antibiotics, but surprisingly he was only in overnight. It did take him a long time to feel better and is only just back to his 'normal' self- Normal with PC and kidney cancer that is!

He gets fatigue and doesn't eat all that well, but is actually doing pretty good considering. He has his scan tomorrow to assess how he is responding to chemo thus far. It seems strange at this point, with him doing ok, that his time may be limited. Its hard to know what to anticipate and he never wants to talk about it!

Hope things are going as well as poss for you, its good to know how others in a similar position are finding things.Do update us xx

HI Onelove3 and Bexs38, I am sorry to hear of your situation. My husband had the Whipple in March 2015 but the PC recurred later that year. More likely that they didn't get it all away. Sadly, even with the Whipple PC often reoccurs. My husband was on Folfirinox and hospitalised on four occasions for infections. Sadly, he died in January 2016.

Hi onelove3 we have oncology today. They think the cancer has progressed, we have lived in a normal bubble lately really briefly and I just want it to continue.

I'm really struggling if I'm honest. I'm scared. Terrified of being without him. Everyone say I'm strong, i don't feel it 

Sending love

Oh, I'm keeping my fingers crossed the news was positive? Its such a rollercoaster.

Has his health gone downhill more recently then?

My dad had his scan today to see if the current chemo is doing anything and we have a long wait for the results...ugh.

Oh, I'm sorry. Yes sadly the recurrence rate is high.

Can I ask how his health was in the final months and how you knew he was becoming more unwell?

Its difficult knowing how to feel and gauge how things are going...

Sending love to you x

Hi Onelove3

Having been on forums about PC for a while I think that people's health differs. However, although the folfirinox seemed to work at first by slowing the tumour my husband seemed to get various infections and ended up in hospital. However, he said that he felt a fraud because at that stage he felt well. However, he began to get jaundiced and was hospitalised again. At that point more tests were done and it was clear it was spreading. He also developed ascites which is a swelling in the stomach cavity that needs to be drained. This all happened in the space of a few days. He had pretty well stopped eating as well. He saw a consultant on 31 December and the scans showed it was terminal. He was moved to the hospice. At this point he began to get confused and had lost interest in most things. He was largely unresponsive for his last two days. He did have pain too. As i say though different people have different experiences.

Indeed. Its hard as its unpredictable and differs for everyone, but most stories by far that I've read, the person diagnosed rarely survives that long- so I feel that dad is doing pretty well.

This also make me think that at any time this could suddenly change and I fear the worst. He lives a distance away and I only see him every 2 or 3 weeks.

He still copes well and continues with most things as normal, though takes it more easy. I'm desperate to know what yesterdays scan shows- but its now 5 long weeks until he sees the consultant, so the wait will be long and stressful.

Dad hates talking about it and gets annoyed if mum or I broach the subject, so we all feel that we have to skirt around matters and never have a proper chat.

This is why I seek other peoples stories and experiences, so I can get a rough idea about expectations.

Thanks all, your advice is much appreciated xx

This sounds so similar to my husband, the chemo seemed to stun the tumours but now scans have confirmed growth. He's doing ok, he tries to maintain a positive outlook, but they've stopped chemo, he's been referred to immunotherapy but to be honest not sure there's anything much out there for PC.

I'm feeling so low, numb and scared. I'm 38 and i know I'll be on my own one day.

His family are in such denial, they think I'm negative, so I've stopped sharing anything with them. I let him communicate. I hate cancer.

Hi Onelove3, As I say experiences differ. However, it does seem to be the case that the PC gets a grip fairly suddenly towards the end. My husband didn't want to talk about things. Indeed, he signed up for a year's subscription to his professional body. I think that it's best just to go with the flow of the person who is ill.

It really is frustrating waiting so long for scan results.

Squeaky