A forum for advanced pancreatic cancer issues

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carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

82 year old dad newly diagnosed with pancreatic cancer

Postby carmel » Wed Feb 16, 2011 7:16 pm

My dad was taken to hospital on 1st February with severe jaundice and rapid weight loss, (wouldn't see a doctor until pushed then emergency admission). He has had all the tests, a stent fitted to get rid of the bile from the blocked bile duct which has been effective, Unfortunately been told he has a tumour 2cm big in the head of his pancreas.the doctor said today he didn't think worth operating on because of his age, (even though rest of health good) and situation which is the head of the pancreas, and painted a really doeful picture. Chemo might be an option to stop growth. Dad is in no pain and eating even though losing weight. I wonder if anyone can give advice from their experience of loved ones in this position. We want what is best for dad and don't want him to have operation if no hope. Is it best just to refer him to a hospice and watch him die or to have the op in the hope he might get a few more years? Any comments will be really appreciated as my sister and I just want what's best. The Dr reckons dad only has 3 months. His weight has gone dramatically so he may be right.
Thanks
Carmel

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby lynbo » Thu Feb 17, 2011 12:13 am

Hi Carmel

Have they said if the tumour had spread to anywhere else?
If he is eating and in no pain it doesn't sound like it?
And if they have run tests, have they done a boiopsy?
You need advice from the oncologist, be firm and maybe write down all your questions ?
You and your sister could go together?

Take care
Lynne
Xxxx

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby carmel » Thu Feb 17, 2011 9:02 am

Hi Lynne
They said the cancer hadn't spread to anywhere else as far as they know, and have done biopsies etc. I think the doctor was against the op because of where the tumour is, (head of pancreas). He is only a junior doctor we haven't seen an oncologist. The junior doctor seems to be relaying information between the people who made the decision and our family. My dad wants chemo to stop any further growth but he is becoming so frail we don't think he will withstand the treatment, They are supposed to be "reviewing the review" i.e. original decision not to operate. I think my sister and I asked all the right questions. We will see what happens today but if the op is too risky we don't want him to have it. My dad wants to die fighting which is why he wants the chemo which i think they may give him.

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby PCUK Nurse Jeni » Thu Feb 17, 2011 10:47 am

Hi Carmel,

Your dad should be seen by a HPB consultant surgeon with regard to the operation.

When they speak about fitness it refers to how strong the heart and lungs are to cope with the operation. And the anaesthetic.

If they consider surgery, there are tests which can be carried out to assess this (Echocardiogram and lung function or vitalograph).

This would easily give the yes or no for surgery.

Jeni.

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby carmel » Thu Feb 17, 2011 4:29 pm

Hi Jeni
Thanks for the info. Just sent you a message from my e-mail address. I will ask to speak to a doctor tomorrow and find out what's going on, they seem to forget that time isn't on our side.
Carmel

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby Juliana » Sat Feb 19, 2011 1:11 am

Hi Carmel,
3 months sounds a bit grim considering the tumor hasn't spread, had no biopsy and is 2cm in size and not attached to anything.

Second opinion is the way to go. Also if your Dad is losing weight, but not lost his appetite -and he finds his stools to be fatty/floaty and smelling differently then his Pancreas may be struggling to make the digestive enzyme required to absorb all the nutrients from his food,including the fat in particular.
ASK FOR CREON! Its a capsule he will take each time he snacks or eats. As for the amount, it differs for everyone. Personally to not waste any more time, ask for the 25,000 strength, take 1 with a snack(tea and biscuits) and 3 with a roast dinner and see if it makes a difference. Any excess creon that doesnt get used just leaves the system, so no over dosing etc.

Good Luck,

Juliana

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby lynbo » Sat Feb 19, 2011 2:52 pm

Hi Carmel
Been thinking of you, what's the latest with your dad?
Xxx
Lynne

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby carmel » Sat Feb 19, 2011 8:28 pm

Hi Lynne, Juliana and all my supportive bloggers out there including Jeni who very kindly rang me with sound advice which I took.
Well it turns out dad,s heart is too weak, to have an op or chemo he had the test. But on Jeni's advice we asked for a dietician and Creon tablets, (which were suggested also by Juliana) which he mus tnow be getting as he has less diarrhoea and looked perkier today. Also had sleeping tablets so is sleeping better and regaining his strength a bit. his diet has improved (dad likes all things bad for him).It is now palliative treatment he is getting, and we hope he will improve in himself even though we know he hasn't long. Unfortunately, my dad was the main carer for my mam who was very stressed with the way my dad's health declined and subsequently died in her sleep yesterday so double devastation. But dad's attitude is keep calm and carry on which is what I am doing. Poor dad is missing mam as we all are but there's nothing we can do for her except give her a good send off so that's what we're going to do - at their local pub after the funeral.
I am disgusted at things which have happened at the hospital(hospital name removed -moderator) where he is. The doctors are not telling the nurses what's going on, treatment is too slow. The Doctor on call didn't know dad had diarrhoea for 6 weeks. The sister on the ward who was excellent didn't seem to know much about dad and took the trouble to speak to me - more so when she found out mam had died. some of the nurses make you feel like you are being a nuisance, which I am now. One doctor was "batting" for my dad to have an operation and made the board sit twice but sadly the op turned out not to be an option. It seems some of the staff are very good and others don't seem to care. weekends are ridiculous as there are no doctors. My dad has got swollen legs and an infection, and my sister is visiting tonight so i have told her to get an on call doctor out, that's what they're paid for. I am going to visit dad tomorrow evening as I can see what drugs they are giving him then and how much Creon he is getting as thanks juliana for that info on dosage, I will check what he's getting. I will keep you all posted, as this site is the only thing keeping me sane - it's a wonder that i am not heading for a spell in the funny farm. I will certainly be doing some fundraising for pancreatic cancer uk in the future when my life has regained some kind of normality, as I am a fitness instructor so will think of something innovative. Thanks everyone I will update dad's progress.

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby Ellie » Sun Feb 20, 2011 5:39 am

Dear Carmel

I am so very sorry to read about the problems you are having with your dad and also for the sudden loss of your mum, too. What an awful time you are going through right now. Life is so unfair, isn't it?

Just wanted to say I was thinking about you and hope you find the strength to see you through everything you have to do right now.

Take care,

Ellie
x

margb5343
Posts: 29
Joined: Tue Jan 18, 2011 10:42 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby margb5343 » Sun Feb 20, 2011 12:17 pm

Hi Carmel,

I am really sorry to hear the news about the sad loss of your mum and also what your dad is going through at the moment. It is a godsend this sight as I found it really helpful when I lost my mum aged 64, 3 weeks ago.

I wish I had found this site a lot quicker as we may have been able to help mum out a bit more.The nurses and doctors had the same couldnt be bothered with her attitude, nurses were not made aware that she was terminally ill and only had a few weeks left. For the last 10 days of her life, we managed to get her into the Alnwick town hospital which had a macmillan suite and she got the care and attention she needed. This was so much more dignified for her, having her own room and the peace and quiet she needed. Prior to that she was just shoved from ward to ward ie people with gall bladder problems instead of being in her own room.

We have a meeting at one of the hospitals in a week to discuss the lack of care my mum had, not that we expect anything to happen but at least if it can stop anyone else going through the same.

Mum was only buried 2 weeks ago so at the moment its still very raw for us. I still havent been able to come to terms with any of this.

Take care and give your dad all the attention you can.

love margaret
xxxxx

ladywood
Posts: 39
Joined: Mon Nov 29, 2010 11:31 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby ladywood » Sun Feb 20, 2011 3:40 pm

Dear Carmel, just wanted to say how sorry I am to hear about your fathers illness and the sudden death of your mother. Life can be a bitch sometimes. I do hope you get better treatment now for your poor dad. I buried my sister on thursday it was heartbreaking but we were comforted by the support and kindness we received from everyone, and I too have found this web site a godsend. Thinking of you and family at this sad time. With very best wishes. Marie

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby carmel » Sun Feb 20, 2011 6:16 pm

Hi Everyone.
Thanks for all your kind wishes and support. It sounds like other hospitals are the same as the one dad is in.
My dad has put on weight so the Creon is working which is good news. today he wasn't asleep when we arrived so that is another plus for now. Still no doctors about so will be complaining tomorrow as his legs are in a state and he hasn't had antibiotics. May look at moving him somewhere better as not happy with that hospital but I will let you all know. Many thanks for all your replies and advice and information, especially as most of you will have been through what I am going through now. Mam's funeral is Friday and is giving me something to focus on. I will keep you all informed of dad's progress.
Carmel x

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby carmel » Thu Feb 24, 2011 5:35 pm

Hi Everyone
New turn of events dad is coming to live with me, (they are discharging him tonight) and they are talking about sending him to the outpatients at one of the main specialist hospitals in Newcastle, so maybe he will be offered some treatment after all. The leg infection turned out to be an irritation from salty skin caused by the bile duct problem so he is having lots of moisturiseres on his legs and they were a bit better last night and less swollen. He has been for a haircut today I took him to the barbers, it is the first time he has been out of hospital since 1st february and it was a lovely sunny day.

I think he got a taste of freedom so said he didn't want to stay in the hospital, (also because problem with another patient stealing stuff and trying to get in wrong beds as he is apparently mentally unstable and dad had no sleep). Before I even asked the doctor, he mentioned that dad would be better off at home. So we are all very happy. It is my mam's funeral tomorrow so we have to get through that, but we are all supportive of each other so we will battle on.

Thank you all so much for all your kind words, support , help and advice. I don't think my dad would be at the stage he is without it. PCUK gave me the knowledge to ask the right questions and keep pushing for dad> I had never heard of the charity but when things are a bit normal I will be doing some fundraising and raising the charity's profile. Anyone out there with relatives with the disease I say DO NOT GIVE UP HOPE AND EXPLORE ALL AVENUES OF TREATMENT. Dad May not have a chance yet we'll have to see but at least we will have done our best for him. Watch this space!

pamela
Posts: 27
Joined: Sun Aug 08, 2010 9:52 am

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby pamela » Thu Feb 24, 2011 9:39 pm

I'M so sorry to hear of the loss of your mum and of your dad.

When my dad came home,a district nurse came out twice a week,the times increased as the weeks went by until they came in three times a day each time being here at least an hour. We were also lucky enough to have an overnight nurse come for the last few weeks[mum is not well herself ]

Get all the help you can.

My thoughts are with you.
Pamx

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: 82 year old dad newly diagnosed with pancreatic cancer

Postby lynbo » Thu Feb 24, 2011 9:48 pm

Hi Carmel
Glad your dad is coming home, it will lift his spirits.
But, the fact you have your mams funeral is not good.
I hope you get through the day, and get the treatment you deserve for your dad.
I've heard Newcastle is a good place, we didn't get chance to go there.
My thoughts are with you xxx