Dad deteriorating - advice please!

[root]

Hi everyone, so glad to have found this forum. I wanted some advice/opinions on my 69 year old dad. He was diagnosed with PC last October after he started showing signs of jaundice and bowel problems. He went through an MRI and Ct which showed what doctors thought was a small cancer in the head of the pancreas. As such they believed him to be eligible for the whipple procedure. After 3 months of no treatment he went for surgery 6 weeks ago and on opening him up they found the tumour to be larger than they had thought and wrapped around the portal vein. Therefore they carried out some kind of by-pass surgery to the stomach. There was at this point no evidence of any spread to organs or lymph nodes. Since then he has suffered with an abscess in the wound which is still healing so no chemo has taken place. His only medication relating to the cancer is creon and paracetamol for pain. he is dropping weight quickly and is very weak.

In the last week or so he has become noticeably weaker - very short of breath (cannot climb a small flight of stairs without passing for breath), his face and hands are ice cold to touch, and it appears his stomach is starting to swell (ascites???).

Dad knows what is happening but wont talk about it. Do we ask for further assessment which will frighten him? Will he be able to/ should he have chemo? How long do we have left with him - are his symptoms showing signs of him failing? SO many questions!! Please, any advice or opinions welcome - and be honest!! Thanks in advance

[J_T]

Hello and welcome to the forum.

So sorry to hear of your dad's diagnosis. I'm no medic so can't really give any real advice, others here might be able to and the specialist nurses will be available for phone calls/emails Monday to Friday. They are a brilliant resource so use them.

With my limited knowledge(!) I would suggest his breathlessness may be due to clots. Clots are common in pancreatic cancer and my husband had them in both legs but I know of others who had them in their arms and/or lungs, these can be treated with daily injections to prevent further clotting. I would definitely get a reassessment and make sure your medics are aware of all your dad's symptoms - they can change daily.

I have no experience of Whipples but 3 months before operating seems a long time to me!

Hope you get some better advice than my offering.

Keep us up to date.

Regards

Julia

[InfoForMum]

Sorry you're going through this. Please give the oncology nurses at your local hospital a call or failing that get your GP out. Despite some bad freedback, both services in our area have been great when circumstances have changed. The Acute oncology number is where I would start in your situation, they can refer you to other support if it isn't an emergency, but they will know where to start and the update should make it's way back to your oncologist.

Don't be scared to call the hospital and ask to speak to your oncologists secretary. As for your oncologist to call you back. Maybe email her some info so you don't struggle to get it all straight in your head during a call.

All just suggestions, but hope they help. The acute oncology number will be 24 hours as will your GP out of hours line.

Take care

Sarah

[root]

Thanks for your advice and comments. I just don't know what to think. I watch my mother in law die of lung cancer 6 years ago and it just isn't the same beast. I watch dad throwing up bile and don't know whether it's cancer or post operative complications. Similarly, is his sleepiness the growth of the tumour or his operation? I'm so frightened for him. And for me and our family. It's just vile.

[jules 2015]

Hi

Firstly welcome to the forum, I lost my dad to pc on 1st Nov so know how scarey it can be. I would agree with the others, don't be afraid to contact your out of hours team if your dads condition deteriorates or failing that your out of hours go. My dad too became more breathless as his weight dropped and had clots, so you need to get this checked out.

My advise to you would be to spend as much time with your dad as you can, I don't think anyone can predict what lies ahead. Treasure every moment and just support him the best you can,

Julie x

[Cathy]

Hi

So sorry to hear of your Dad. I know from my own experience how frustrating it is waiting for chemo to start after it has been delayed due to another issue.

Your Dads breathlessness might be due to ascites. An ultrasound scan would show if that is the case and this can be drained if it is causing problems. Try increasing creons if you think weightloss might be attributed to digestion rather than lack of appetitie. I'm afraid I can answer your 2 other questions but the bile and sleepiness might be due to both the disease and getting over quite a big operation.

Have you an appointment coming up?

Cathy xx

[root]

Thanks for all the good wishes and comments. His next appointment is in 2 weeks time. Today, mum tells me, he cannot even make the step down into the garden because he is so breathless. From the chair to the back door is only about 10 steps. I live 2 hours away so haven't seen him for a few days. I feel really helpless being so far away and the conversations I have with mum are restricted because he cannot accept how I'll he is.its hard to know what is going on. I am going to call his oncology nurse in the morning.

[InfoForMum]

Good for you! Do that. They know how horrific this is for family as well as patients, so while taking the practical details down, they will also know the psychological impact waiting will have. Being a daughter is hard. Dad's don't accept a role reversal very easily sometimes, but if you have a professional tell you it's time to get him properly assessed (and again I'm no professional, but sooner rather than later would seem sensible)then maybe he will be persuaded.

Could you ask them to give their house a quick ring. A "just seeing how they are" call?

Sarah

[PCUK Nurse Dianne]

Hi Root,

I am sorry to hear your father is struggling at present. It does sound as if he has ascites and may be also a pleural effusion (so fluid in the lungs) which would benefit from being drained. Please feel free to be in contact with us on the support line (020 3535 7099) and Jeni or I can speak to you about this, and tell you how to access some appropriate support for your parents at this time.

Kind regards,

Dianne

Support Team