Hello - first post

[Essee11]

Hello

I’m so sad and angry that I find myself here I almost don’t know where to begin.

I’ve been reading some posts and I’m devastated for everyone.

I’m 34 and in sept my dad who is 63 was diagnosed with stage 4 pancreatic cancer. He has started chemo but isn’t doing to well with it. He had emergency surgery due to a blockage in his intestines caused by the tumour and since then his quality of life has been so poor. Before the surgery he still had a good appetite, could manage a drink in the pub etc now all that has stopped.

My dad worked so hard to be able to give him and my mum the best retirement and I can’t help but be angry that he won’t be here to enjoy any of it, a pathetic 2.5 years. My dad is the funny social guy that everyone loves and it’s so hard seeing him with no energy or drive.

I realise I haven’t really asked a question on here but if anyone is in a similar position would be nice to relate.

[PCUK Nurse Rachel R]

Hello Essee11,

It's Rachel here, one of the support line nurses. Welcome to the forum and thanks for posting about Dad. I'm so sorry to hear of Dad's diagnosis, I can completely appreciate why you feel so upset and angry. I agree that now should be a time that is special for Mum and Dad considering how hard Dad has worked. Life often feels so cruel and unfair.

It sounds as if Dad is going through a really hard time, I'm sorry that he's struggling with chemotherapy. It must be really tough to see Dad as he is now.

I'm sure others here in the forum family will reply Essee11 soon. Please know that we are here on our support line if ever you wanted to chat - details are below. We're here to help advise you or just simply listen if that would help.

Kind wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Gaffer]

Hi Essee11

This is my first post but your post resonates with me so much. My husband was diagnosed with stage 4 PC in Aug 19 aged 54. It was such a bolt out of the blue as had no symptoms until a few days before diagnosis. We’ve been married for 34 years and have a 29 year old daughter. We had planned to retire at 55 and had everything in place in order to do this.

Like you and your parents, our life too was turned upside down.

However the advise I would give is:

Don’t get preoccupied with time scales, I did in the beginning, my husband was given a shorter timescale and is doing well and now 15 months since diagnosis and has tolerated 19 rounds so far of folfirinox.

Knowledge is power, find out as much information as you can and don’t be afraid to ask questions.

Use the support of the specialist nurses at PCUK, they are fantastic and invaluable and don’t know where we’d be without them.

Acknowledge this is a rollercoaster journey, it’s ok to have days of ups and downs

You said your dad had an operation for a blockage and poor appetite. My hubby has 2 duodenal stents and a bilary stent, and learnt over time what is good to eat and what is not- there are recipe books available.

Is your dad taking Creon? This is a pancreatic enzyme which helps in the digestion of food and I would say this is the one thing that helped the most.

Encourage your dad to eat whatever he fancies/ if it’s ice cream for breakfast so be it. It’s all about getting calories in, full fat milk, double cream added to soups, adding marvel or buy some complan shakes. Would be ideal if he could be referred to a dietician as they can prescribe high calorie shakes, soups yoghurts.

I know full well how scary this is, and definitely unfair, but just take each day as it comes. Best wishes x

[taoofpooh]

Hello Gaffer.

I too am 54, like your husband and was diagnosed with Stage 4 PC.

I have had 12 rounds of Folfirinox which ended nearly 12 months ago.

I read that your husband has had 19 rounds, my Oncologist is reluctant to give me more Folfirinox stating the toxicity could outweigh any benefits. I have tried to understand the reasoning behind this but cannot as the Folfirinox at least stabilized the disease. Can you tell me if your husband had all 19 rounds done concurrently or was there a break after 12 rounds?

Kind Wishes.

Paul.

[Gaffer]

Hi Paul

My husband started folfirinox Oct 19 and had his 19th round last Tuesday. He was initially having 12, then a break and then the option to have more if he could tolerate it (80%, other than first round of 100%.)

He has the chemo every other week and did 7 rounds before an enforced break because he had a number of issues, Picc line had to be replaced and he also had dudeonal stent fitted due to blockage. Then chemo resumed but there was further enforced breaks because of high liver enzymes. After he had finished 12 was asked if he wanted a break of choice. Because by then it was March and country in lockdown he decided to carry on as the trips we had planned etc couldn’t happen so he thought he may as well carry on and hopefully get some shrinkage of tumours. Since round 12 to present he’s had a couple of enforced breaks due to partial blockage of dudeonal stent and therefore another dudeonal stent fitted and again high liver enzymes.

We did manage a 5 week arranged break in October when restrictions lifted to get some time away in the Peak and Lake District.

His oncologist is of the view that while ever it is working he can keep having it. His last scan shows his tumours are stable but potentially there are issues with both the bilary and dudeonal stents again!!

I know I’ve gone round the houses to answer your question. I wish you all the best.

[Essee11]

Hi thanks for the reply.

Sounds like you’re husband is doing great, I am only pray my dad makes it the same.

He has just started taking the pills to help with digestion this week, it’s helping but he is still struggling with toilet later in the day.

The type of chemo he is having is only available for a max of 6 months, apparently the human body wouldn’t tolerate anymore than that. He has a rescan after initial 3 months in jan.

like u say I need to get more ideas on food for him, he has no appetite after his opp x

[taoofpooh]

Hello Gaffer and thanks for the info. Yes I too had to have a stent put in but luckily there has been no problem with it since. I hope the issues are resolved quickly for your hubby. There are enough other symptoms to deal with without added complications!

My exact thoughts were like yours and your husbands, why not carry on with the chemo if A) it has stabilized the cancers and B) I can tolerate it and like you say during this dreadful lockdown 'enjoying' time away is not possible. It seems Oncologists have different opinions on Folfirinox continuing after 12 rounds.

54 is certainly no age to get this disease is it.

Kindest Regards.

Paul.

[taoofpooh]

Hi Essee.

Digestive problems are par for the course with this disease. I know from experience that what I can tolerate food wise one day I will not be able to the next and also the crazy cravings that you can have!

Your dad will 'intuitively' know what he can eat, try not to force him to eat anything he does not feel he can cope with. Let him be your guide.

Kindest Regards

Paul.

[Essee11]

Hello Paul

My dad has also been told 12 rounds. He has scan after initial 6 which will be in January.