What to Expect

[anthony]

My Dad has been diagnosed with PC - Suddenly everything has changed he was a fit and active 84 year old and in a matter of weeks he has lost 3 stone in weight down from 13.5 stone to 10.5 stone and is too weak to do much more than lay in bed most of the day. This started just before xmas when he began feeling tired and losing weight. Our GP suggested it was due to his diabetes - newly diagnosed just months before. Then end of April I noticed he had jaundice and took him to A&E they were concerned and did some tests which suggested PC. They put in a plastic stent (as an outpatient) and he went home the same day. Doctor said let him recover from the jaundice and we will review him in about 6 weeks. Unfortunately the stent did not work as it got sucked into the liver. After a few days I took him back to A&E and they admitted him into hospital. A further few days later they put in a new metal stent and tried to retrieve the old plastic one, but failed. There was apparently quite a lot of poking around to retrieve the old plastic stent without any luck. This poking around seemed to have a very adverse effect on my dad - his heart rate went to 140 and the doctors were very concerned about him for 3 days. The heart rate slowed and he then had infection but after 2 weeks in hospital he came home. After the first stent was put in place he walked out of the hospital and commented that "that wasn't too bad". After the second stent was put in he spent 2 weeks in hospital and I think we nearly lost him. Since then 6 weeks ago he has been home but very weak - like unable to stay out of bed for more than a couple of hours a day. He has lost his appetite and is still losing weight. We saw the consultant a couple of weeks who suggested an operation and chemo was not possible at the moment as the jaundice had not been resolved completely and dad is just too weak. The consultant seems of the opinion dad will regain some of his strength and at that time he will review again - my question is how likely is it that he will get back to the condition he was in before the second stent was put in place. At that time his bilirubin was 240 and went up to 460 - the last blood test last week showed it to be 40 so I am wondering why he does not have at least the same energy as he had prior to the stent when the bilrubin was 240? Also on this forum others have spoken about recover from jaundice following a stent in terms of days to recover. Can we expect him to recover from the jaundice? or is it possible something else is now making him so weak? Please help!

[J_T]

Hi anthony and welcome to the forum.

Sorry to hear about your dad's diagnosis. My husband had similar problems, he's 61. He got jaundice and they tried to insert a plastic stent by ERCP, this failed and he had 2 metal stents inserted through his side. He then had to wait for his bilirubin levels to get back to near normal before chemotherapy could start.

He was very weak and had lost weight and was itching like mad when he had the jaundice - not very good at all but he did recover from it. He is now on the Folfirinox regimen and is due to have his 5th cycle this week.

Provided your dad's bilirubin levels get back to normal, and I'm sure they will now he has the stent, as long as he is strong enough I don't see why he can't have chemotherapy too. My husband and one other guy in our region is on Folfirinox and the other guy, although we haven't met him, we're told, is 80 years of age! There are other less aggressive chemotherapy treatments so even if your dad isn't fit enough for one regimen he may be able to have another.

Age should not be a barrier. My own dad is 92 and still quite fit so I know 84 year olds can still be very fit.

best wishes and let us know how you/he gets on.

Julia

[LindaH]

Hi Anthony,

I think tomorrow - Monday 24th, one of the nurses (Jeni or Dianne) will be ale to answer your questions in more detail, so hang on in there and you will receive all the information you need.

All I can add, that even though your dad was very fit before his PC, 84 years - bless him - is a good age, goodness, I am 'only' 59 and I would struggle to go through all your dad has been through.

I started with Jaundice and Diabetes just before Christmas last year and was rushed into hospital where they introduced a metal stent into my pancreas to allow the bile to drain away. The procedure wasn't pleasant and I cried through most of it, but it did work within a couple of days and my skin slowly became it's natural colour again and I was kept in hospital for two weeks, but having said that, I do have a tumour at the head of my pancreas. I also lost over three stones within a relatively short space of time and of course it does take it out of you, but my weight is becoming stable again now, so your dad should recover his loss. Have he tried Complan food supplements, because at one time, this is all I could face and it went down very nicely.

Has your dad had a CT scan? Does he have Pancreatic cancer?

Try not to worry too much Anthony, your questions will be answered, so for now take care and (((hugs))) to your dad.

Linda

[Bee]

Hi Anthony,

Really sorry to hear your dad is feeling so unwell, PC is a cruel disease and really turns lives upside down. Hopefully some of your questions can be answered by the specialist nurses on the forum. And when you do next see the consultant don't be afraid to ask all your questions and if necessary take a list in with you, they are used to it.

Everyone is so unique so I don't think there are clear answers for what happens when, as frustrating as that is, I do hope you get some answers though to clarify things and get some support from this forum

Keep us posted and take care,

Bee

[anthony]

Many thanks for the replies to my post - I was hoping one of the specialist nurses on the forum would provide some input - j-t and Linda H were particularly helpful as there are similarities to my dad - many thanks. It seems other have recovered from jaundice so I wonder if dad will? I guess it is all about timescale and what other complications develop I suspect everyone is different although the range of complications will probably be similar to others with a tumor on the head of the pancreas - then the cancer could move to other parts of the body and then dependent upon where exactly the symptoms will vary but for the moment I am particularly interested in symptoms that will develop due to the growth on the head of the pancreas - if anyone can help it would be absolutely marvelous and help us in understanding this awful condition. I look forward to any replies.

[Cathy]

Hi Anthony

Welcome to the forum and I too am sorry to hear of how poorly your Dad has been - his consultant sounds positive though which is a good sign.

You can contact teh nurses on this site directly who will be able to answer some of your more detailed questions. They're tel 020 3535 7099 or email: support@pancreaticcancer.org.uk.

Best of luck

Cathy xx

[PCUK Nurse Jeni]

Yes thanks Cathy - Hi Anthony.

I will email you about this directly - we often wait to see if folk email us themselves, but I think you were expecting an answer on the forum, which we do sometimes too. However, sometimes there is too much information to put on a post, so I can email you directly and go through your posts, answering any queries that you might have.

Kind regards,

Jeni.

[MSH]

Hello Anthony, I am sorry to hear of your father's illness.

I had a metal stent fitted on the 1st of March when my bilirubin was 170. This worked initially but I required a further ERCP to clear the sludge on the 19th March. It was a further 4 weeks before the jaundice cleared sufficiently to allow chemotherapy. I the had a little bit of trouble with fever after the first Folfirinox which is likely to have been from the stent. There is a high risk of infection here with chemotherapy.

In your father's case it is likely that the jaundice will improve and clear over the next few weeks, but that this is only one part of his problem. I suspect the focus of treatment will be on quality of life and palliative care.

Mark

[anthony]

My dad seems to be getting over the jaundice and has now been prescribed with creon to help with digestion so we are hopeful that he will improve over the short term and what happens longer term we just have to wait and see

[Cathy]

Hi Anthony

Well, that is 2 very positive things which will make your Dad feel much better.

My partner hasn't needed creon but you will see from other posts that it seems to do wonders for managing weight and digestion for those that need it so that, and the recovery from jaundice, ought to perk him up no end.

All the very best for his continued recovery

Cathy xx