New here and scared

[wobblybobbly]

Hi

I don't really know what to say, other than my dad has been diagnosed with pancreatic cancer, aged 72. It started when he had some stomach pains, and they found a scaterring of secondary cancer cells on his liver. I am in shock and am just heartbroken really. The cancer is in the tail of the pancreas, so no chance of surgery. Chemo will be his only option. He will hopefully have a biopsy on Wednesday and then get to meet Oncology team to discuss options. I am so new to all of this, and am unsure as to prognosis, although I understand it is bleak.

Anyway, just wanted to say hello. Sorry for the short message, am just at a bit of a loss as to what to say. I guess I am just worried I won't be able to be strong for him.

Alison

xx

[SteelCityBaggie]

Hi Alison

We can be strong together. See my thread below

Mark

[Nardobd]

Hi Alison and Mark

My hubby was diagnosed in Feb 2009 and is still here and fighting. It is strange how you find a new "normal" which includes this horrible disease. The fear doesn't go away but you do get used to it. You might want to read the "Just Diagnosed" section which is intended for those who have just heard the news www.pancreaticcancer.org.uk/just_diagnosed.htm. It also gives you an idea of what help and support is available.

Let us know how your respective Dads get on and remember we'll all help if we can - even if it's only to allow you to vent sometimes.

Kind regards

Nicki

[wobblybobbly]

Thank you for your replies.

I rang my dad today to find he had gone for his liver biopsy without telling me....naughty but understandable I guess Even his wife thought he had told us! Anyway, she said she would ring me if he came home tonight, but that it might not be until the morning. As I haven't heard I am assuming they have kept him in overnight. It is all so sad. My mum died suddenly just over two years ago. My dad actually remarried just in January, they were just starting their new life together. It just all feels so wrong.

I am kind of dreading what the rest of this week brings. I just don't know what to expect. I know it is inoperable, and that even chemo won't make it so. I guess I am just scared to know how long he has left, and every time I think about it I feel sick with terror. But as you say, I will find a way to be strong for him and his lovely new wife.

Thank you again. I realise I am not making much sense, or even saying much, but it is nice to post somwhere that people understand.

Alison

xx

[Nardobd]

Hi Alison

None of us make sense on here! lol Seriously, though, how can anyone make sense when their world has been turned upside down?

Let us know how your Dad got on if you can.

Nicki

[wobblybobbly]

hiya

Well my dad had his liver biopsy and he is ok. He came home this afternoon and I spoke to him on the phone. He said he thought the overnight stay in the hospital did him the world of good. They have also given him some better pain relief which is good. One thing they did say is that his blood sugar levels are very high (over 12 yesterday) which I guess could be onset of diabetes? He is now awaiting appt with oncologist, but not likely to be until next week when they have biopsy results.

So I guess it is more waiting. I'm getting used to this.

Thanks for caring everyone.

Alison

xx

[Maisie]

Hi Alison,

It seems you and I are in this terrible position at the same time (I first posted today). My mum was diagnosed with pancreatic cancer last week which has spread to the liver. I am also very much in shock and so confused - this all came out of the blue!

How is your dad? Has he had his dad's biopsy results back yet?

You are not alone! Keep strong (tough I know!)

Take care,

Maisie

[kazzie]

hello I do know how you feel,I was in this boat 3 years ago,with my Dad,I thought my world had fallen apart,he too did things behind my back to start with,he seemed so much stronger than me,which I then felt even worse about,but I eventually learnt to be better and went with him to appts.This is a fantastic site I was on here at all times of day and night and to have everyone to turn too was the biggest help,to get me through,all my thoughts are with you ,going through this.

karen xx

[wobblybobbly]

Well alot, but not alot, has been happening since I last posted on here. If that makes any sense at all. After becoming very weak and breathless, and being diagnosed with diabetes, Dad was admitted to hospital for a week while they tried to stabilise his blood sugar levels. He was on an insulin pump. While there they also discovered he had two blood clots on his lungs, and pneumonia, so things have not been good for my poor dad. Anyway, he was eventually discharged, started on insulin injections and for the past couple of weeks his sugar levels have slowly got much better. However last couple of days he has been very tired again, and had a bit of temperature, and so at appt with oncologist today they apparently said they think he has a kidney infection, so have put him on antibiotics. Another delay to start of chemo.

Anyway, all being well, he has an appt next Friday to discuss the start of treatment. Apparently he will be doing a clinical trial - chemo combined with another drug (not sure what). Can anyone advise?

Hopefully things will improve as much as they can in the coming weeks. He has had such a rough ride.

Alison

x

[PCUK Nurse Jeni]

Hi Alison,

There are a number of trials running for pancreatic cancer in the UK. We have a list on our website here http://www.pancreaticcancer.org.uk/research_trials.htm

and you may recognise the name of the other drug your father will be receiving as part of the trial he is taking part in.

Kind regards

Anna

[Nardobd]

HI Ali

Do let us know what the other drug is and how your Dad gets on on Friday. It's good he's finally able to start.

Kind regards

Nicki x

[wobblybobbly]

Hi

Went for the appt with my Dad earlier, and he will be doing the IMM-101 trial. It started last week apparently. He will be part of the research group, but obviously may be in the group that doesn't get the additional drug. Anyway, will keep you posted.

Alison

[Nardobd]

That's good news Alison. let us know how he gets on

Nicki

[wobblybobbly]

Well, just an update I guess. Things have not really been too good. Dad is part of the group that gets the IMM-101 injection, as well as the chemo. He had the injection 3.5 weeks ago. His pain then got a lot worse, so he ended up being admitted to Sue Ryder hospice where the intention was they would try and get a good regime sorted out. While in there he had his first dose of chemo (last week). and a couple of days later ended up with pneumonia for the 3rd time. As a result he wasn't allowed home. He also has fluid on the lungs, in his abdomen, and his legs, ankles and feet are unrecognisable as belonging to him. He is on oxygen and his condition varies daily. He is very weak and quite breathless.....and utterly fed up. He was due his second lot of chemo tomorrow, but it is looking unlikely. They have now told him he is jaundiced, so he has been transferred to the local oncology ward to see if it is viable to insert a stent into his bile duct. Another case of wait and see.

My poor poor dad - it just seems like one thing after another for him. He just wants to have the chemo, but at the moment he is just too weak. It really is not looking good.

But we continue to try and keep his spirits up. )

Alison

xx

[CFF]

Hi Alison

So sorry to hear about your dad. I know it's horrible to see our dads suffering and seem to go downhill so quickly, especially when you're within the grasp of treatment and he's too poorly to have it. My dad is 76 and has had pc since December 2009 and despite having the whipples the cancer has returned. But in that journey he has had so many ups and downs.

However, I have learnt that sometimes the symptoms for a related illness (diabetes) can make them seem more poorly than they are and once these are sorted it can give them a lift. I remember when my dad needed a stent and had jaundice I thought we only had days / weeks left and then things changed, and then there was a new problem and then things changed etc etc etc. It's been very up and down. I think of myself as reasonably robust but this is such a shock and it's difficult to stay strong all of the time.

try not to think too far ahead and take care of yourself. Hope your dad has an 'up' soon and is able to benefit from treatment.

x