A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
MJM
Posts: 2
Joined: Tue Jan 16, 2018 6:26 pm

Is this the beginning of the end?

Postby MJM » Thu Jan 18, 2018 11:07 pm

Hello,

I have no idea how it's taken me this long to get myself here in a position to actually sit down and ask for help. I've seen an incredible decline in my otherwise strong dad over the last two weeks and I'm just crippled with fear that we may have reached the stage now where we may not come back from this.

I'm not sure what I'm hoping will come from this, answers? reassurance? or just some kind of relief at getting it off my chest? Either way if anyone gets to the end in reading this then 1. thank you incredibly for listening to my story and 2. I am so sorry for being the worlds biggest rambler!

My 68 year old dad was diagnosed with stage 4 pancreatic cancer in July last year, by which point it had already spread to his liver and so were keen to start chemo asap to stop the cancer from spreading any further. We never asked nor were told about general expectancy but obviously I made the error of googling as I'm sure everyone does and it's haunted me every day since. Anyway, after only his second session of folfirinox dad developed an obstruction in his bowel which caused him to have a major operation that landed him in intensive care for two weeks in hospital.

After this he was understandably terrified to go back to chemotherapy and so for 2 months he had no treatment but, after recovering from the op, was generally in good health but had no contact with his oncologist at all. I managed to convince him to go back for a CT scan in December after he'd become unwell and with the scan showing that the cancer had grown, he finally agreed to go back to the chemo, we had our first session 2 weeks ago.

He's got absolutely no appetite and hasn't been eating properly since December (only shakes from the dietician and tinned fruit) which has left him incredibly weak, but since Christmas he's barely left the house and hasn't even the strength to walk around the house or get dressed sometimes. He's lost over a stone in the last 2 weeks, and we found out yesterday he's developed type 3c diabetes. I have no idea what I can do to help him anymore and I'm just absolutely terrified we're coming to the end of the fight. I quit my job to care full time for him as it's just me and him at home, so I guess I just would love to know if anyone else on here has had a similar journey or any idea of what I can expect may come next? I just want to mentally prepare myself I guess...

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Is this the beginning of the end?

Postby Wife&Mum » Fri Jan 19, 2018 9:48 am

Dear MJM

Welcome to the forum but I’m so sorry that you find yourself here, clearly you’re going through a terribly difficult time with your poor Dad.

Hopefully you’ll receive replies from members who understand your situation better than I do (my hubby is still relatively well) but you can also call the PCUK support line Mon - Fri. It’s staffed by specialist nurses, they’re very knowledgeable and sympathetic. You can email them too. Contact details are near the top of this page.

W&M x

Veema
Posts: 466
Joined: Mon Feb 02, 2015 5:35 pm

Re: Is this the beginning of the end?

Postby Veema » Fri Jan 19, 2018 11:24 am

Hi

Firstly, I'm so sorry you find yourself here...don't worry about the rambling, we've all been there and done that!

Secondly...have you got the palliative care team on board? Access to hospice? We weren't referred to the palliative care team until about 4 weeks before my husband died and it's something we could have benefited from much earlier, so if you haven't, I'd suggest you get referred asap as they will be able to help with all his symptoms, any pain or confusion that arises and just be there as a general support to you too...it's mighty difficult caring for someone.

As you know, everyone is different, and so to be able to give timescales or how it's going to go is nigh on impossible for us non-medics to do. However, that said, it is often the case for the appetite and eating to go out of the window towards the end and it does sound like your Dad is just feeling absolutely rotten, although you don't mention that he's in any pain. Our palliative care team were the hospice nurses and they are much better able to suggest how things are panning out. Even so, our nurse suggested to me that my husband had about 4 weeks and he died 4 days later.

It might be worth you having a read of some of the threads on here...mine is entitled 'Ascites' and describes how things were for us. Marmalade's 'Our journey without chemo' gives a different approach and how the ending was for her and Louis. And have a look at Justamo's recent thread as her husband, Peter, has just recently died and was different again. There are other's too...Veebee's and Elaine's are fairly recent losses too.

It is an awful situation to be in and like I said earlier, it's incredibly difficult caring for someone you love. It was my husband that died of pancreatic cancer and I kept him at home until the day he died, but he eventually died in hospital. It's worth thinking about the hospice, because that will give you the chance to be a daughter again, rather than a carer, but I don't know what your Dad's wishes are. My Dad died of liver cancer in August last year and I felt totally different about that than I did about my husband...my Dad was invincible...he was my Dad...he'd always been there and I found it much harder than my husband...he was in hospital too when he died, and although it wasn't awful and he was well cared for, I do wish we'd been able to get him into the hospice, which might have been a bit nicer.

I'm rambling now...sorry...please contact the nurses if you need anything...and keep us posted if you've got time to, or if you have any questions.

Much love

Vx

patrigib
Posts: 38
Joined: Sat Mar 05, 2016 7:53 pm

Re: Is this the beginning of the end?

Postby patrigib » Fri Jan 19, 2018 7:53 pm

My husband, diagnosed Sept 2014 stage 4 was very poor in May 2017, due to diabetes. Once this under control he was much better. In December 2017 He was very down, and I wondered if he would reach Xmas. Even though he is very tired because of chemo, he is ok. So I think pancan has it's ups and downs, and it's very hard to make any prognisis. My husband was given one year at the best in Sept 2014, so who knows.
I hope your father will feel better soon, and at least will be as comfortable as possible. Please keep us updated and ramble as often as you like.
Hugs!

MJM
Posts: 2
Joined: Tue Jan 16, 2018 6:26 pm

Re: Is this the beginning of the end?

Postby MJM » Thu Feb 08, 2018 4:00 pm

Thank you all so incredibly much for your replies. Unfortunately the same day I wrote my initial post we were rushed to hospital as dad had developed severe Hyperglycemia with his blood sugars over 50, and he was slipping into a diabetic coma. The ambulance managed to get us to hospital very quickly but unfortunately here we found out he’d also developed sepsis in his blood and so both together meant he became incredibly ill very quickly as the antibiotics the doctors put him on to fight the infection were intense and so for a couple of days we were very scared. He was unable to speak or move and was very delirious.

We were put in touch with the palliative care team at this stage, and since then they have been the most incredible source of support throughout. Dad initially made amazing progress very quickly and until yesterday was back to himself mentally with a strong motivation to get stronger and generally better in his physical self. The palliative care team referred us to our local hospice and so we had been awaiting a room there, until last night where he took a bad turn and has become incredibly confused in his head and the doctors told me this morning that he’s experienced a rapid decline in his health. Now we just have to see how the next 24 hours pan out, but the doctor advised that there was no more treatment that they could give him and so is just a case now of managing his symptoms and ensuring that he is comfortable and in no pain.

PCUK Nurse Jeni
Posts: 984
Joined: Mon Jun 14, 2010 12:30 pm

Re: Is this the beginning of the end?

Postby PCUK Nurse Jeni » Fri Feb 09, 2018 4:19 pm

Hello MJM,

I am sorry to hear of all that your dad has gone through over the past several weeks.

A very difficult and challenging time for your dad and the family.

Its great to hear that you have found the palliative care to be so supportive and helpful to dad at this time. Its such a valuable service.

Do they know what has caused this latest episode at all? If he is confused, has he had his bloods checked at all, and are his electrolyte levels ok? Sometimes, imbalances in the electrolyte levels can cause confusion and agitation, so it might be worth checking this?

Does your dad have a temperature at all? As this can be another reason?

I hope that there is some change in dad over the next 24 hours, and that as you say, that he is pain free and comfortable at this worrying time.

We are contactable on the details below should you need to speak to us.

Kind regards,

Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Hbarker21
Posts: 1
Joined: Mon Aug 07, 2017 5:56 pm

Re: Is this the beginning of the end?

Postby Hbarker21 » Sat Feb 10, 2018 9:28 pm

Hi MJM

I am so sorry to hear about your dad. Your post stood out to me as my dad has been experiencing similar symptoms over the past month. I wanted to share his story with you with the hope that it might help slightly but also because I need to write it down. I hope that’s ok.

My 56 year old dad was diagnosed with locally advanced pancreatic cancer in February 2017. He had an attempted Whipple in March 2017 but it had to be abandoned due to growth of the tumour. Dad then had 10 cycles of chemotherapy and we managed to find a surgeon in France who was willing to operate. There were various complications but his surgery was eventually scheduled for 12th January 2018.

However over Christmas and new year dads health took a turn for the worse. He collapsed with Sepsis on 2nd January, he was also unable to move or speak and very delirious, and also had a clot in his portal vein. The antibiotics did work but I found dad to be completely out of it and at one point not recognising who I was. This sounds similar to your dad so I understand what you have been through. This was due to the infection but also severe dehydration so I wonder if this is something that could be affecting your dad?

Dad came back around but a week later he had oedema throughout the lower half of his body, ascites in his stomach and ended up back in hospital. He also lost a lot of weight and had very limited mobility. The oedema was caused by low protein. Despite the doctors advising against it and wanting to admit him into hospice my dad was so determined to get to France and with an amazing palliative care doctor giving him some medicine to help, he managed to. We are currently in France awaiting a new date for potential surgery and they have been giving dad nutrition to try and get him strong enough for a Whipples Procedure. We know it’s risky but dad wants to keep fighting.

During the past 2 months I have been constantly wondering if this is it and preparing myself for the worst and then it changes. I have no idea if dad will get the surgery and if he will make it through and the not knowing what is happening or what will happen next over the past 2 months that have been the hardest.

Antibiotics, fluids and nutrition are all what helped turn my dad around in the past few weeks and rather than looking at him being admitted to hospice he is now potentially awaiting surgery. I know your dad is in a different situation but I really hope some of this may help.

Wishing you and your dad all the best

Sandra58
Posts: 5
Joined: Tue Feb 06, 2018 6:58 pm

Re: Is this the beginning of the end?

Postby Sandra58 » Tue Feb 13, 2018 2:04 am

Hi MJM
So sorry your dad is going through this and I wish you both the best. I was diagnosed in August at age 68 with stage 4 pancreatic Cancer already in my lungs and some surrounding lymph nodes. At that point I had lost 30 pounds since the beginning of last year.
Eating and hydration are an on going problem and brought me to the emergency room in October. After much hydration and figuring how and what to eat I am getting my strength back. My son is a doctor and cannot believe that my blood work is great, the tumors on my pancreas and lung have stabilized and with my chemo schedule I can plan what days will be good days and what the bad days will be( usually the 3&4 day after chemo pretty bad)
Anyway I want to give you hope that maybe your dad can get stronger so I will give you what has worked for me:
1) I find it difficult to drink plain water so I add a lot of lemon or lime to the water and try and sip it all day. So try flavors in water but I try to stay away from sugar as my son tells me cancer feeds on sugar.
2) I eat a lot of homemade egg custard because it slides down very easy and has a lot of protein which helps with nausea. My aunt died years ago from pancreatic cancer ( in her 80’s) and I just recently found out that she too craved custard. Lots of eggs, whole milk, little coconut palm sugar ( which is not like white sugar) and vanilla.
3) unsweetened organic applesauce
4) I take a B6 vitamin to help with energy and the numbness in my fingers and toes from the chemo
5) usually I have chemo on Monday and they add a steroid to the IV and the steroid gives me energy and a feeling of hunger for about 2 days ( dr said he cannot give me more that the 1 steroid.... it would cause other problems). So I eat on the days I can, but try and stay hydrated so I can control my nausea.
4. My daughter makes me a healthy smoothie everyday and she thins it out with Almond milk because thick things are difficult for me
Love and blessings
Sandra