My lovely Dad has passed away

[Janiebobs]

I have been reading the extremely informative forum avidly for a couple of weeks now. My 83 year old Dad had been diagnosed with diabetes in the summer. He was told to control it with diet and he seem to be doing well. However at Christmas my parents were coming to stay with my family. I noticed how jaundiced my dad appeared and he had lost lots of weight. I took him to my local walk-in centre and they sent him straight to hospital. He had a CT scan and was released on Christmas Eve. I took him home after Christmas and we saw his GP who talked about cancer and referred him to a couple of consultants. The Gastroenterologist stated it was advanced PC and as it had spread to his intestines and his kidneys. He also said Chemo wasn't recommended as it would give him a couple more week and possibly give him very bad side effects. My dad asked for a second opinion and he is seeing a oncologist on Tuesday. My brother who took him to the appointment asked if Dad could have stent and the following week he had stent fitted by ERCP and they took a biopsy. We get the results on Tuesday and also we see the urologist for the results of a second scan of his kidney to see if it is a tumour or a cyst

The stent was fitted two weeks ago but I feel he is still quite jaundiced and worry that the stent may have slipped. Dad still has appetite but his diet is quite limited and has been taking chlorphenamine, unsodeoxycholic acid and a laxative as he is quite constipated. As you can imagine we are all in shock as we get our heads around this devastating disease.

Edited January 27, 2015 by Janiebobs

[J_T]

Hi Janie and welcome to the forum.

So sorry to hear about your dad. Must have come as a very great shock to you all. I would have thought a stent would have been the first thing on the agenda without any prompting from your family! Does your dad have the awful itching associated with jaundice? We found Questran the best for tackling that. Take a couple of weeks or more for the bilirubin levels to drop and the yellowness to disappear.

Good luck with your next appointment.

Julia

[Janiebobs]

Thank you Julia for you encouraging words. Dad is also on Creon4000 to help enzymes will post back when we get some further information

Jane

[Cathy]

Hi Jane

Best of luck with those appointments. If your Dad feels well enough he may find that chemotherapy is very beneficial in controlling side effects. Not all chemotherapy gives bad side effects - gemcitabine is the standard chemotherapy for PC and often fairly easily tolerated.

See what the oncologist thinks...

Cathy xx

[Janiebobs]

Hi Cathy

Thank you for the advice about gemcitabine I will ask tomorrow!

Jane

[cestrian]

Hi Jane

Agree with Cathy that Gemcitabine generally has limited side effects and could be worth a try. I've been lucky and had no side effects to speak of. I think it is routine for patients to be given an IV dose for anti-nausea prior to each delivery of chemo.

Good luck to your Dad and all your family in coping with his illness.

Love and Peace

Mike

[Janiebobs]

Hi

Dad went for his consultants meetings on Tuesday. The oncologist said the brushing (biopsy) they did with the ERCP came back negative but he said he and other colleagues were in no doubt that it was PC. He offered Dad another biopsy which could be done by endoscope or by going through Dad's back but he didn't advise it as Dad has become so frail. Also as Dad lives in Cumbria they would take place in Newcastle upon Tyne which is 100 miles from their home. Dad's most recent blood tests showed that his jaundice was falling and he thought it might take a couple more weeks. As Dad has never itched he took Dad off the chlorphenamine. They talked about the possibility of Chemo dad was abit concerned after reading a recent New Scientist article but the oncologist was able to reduce his fears. As Cathy and Mike suggested the oncologist recommended gemcitabine talking about its lack of side effects. But said dad's jaundice would have to be clear and Dad needs to build himself up as he has lost so much weight. Dad who is also diabetic (type2) had been told to avoid fat but the oncologist (and the McMillan nurse previously) said to eat what he fancies and the oncologist said if it's a rich meal to take two of his creon4000.

The oncologist said he doesn't advise chemo as currently my dad is in no pain and although the tumour is advanced it is local (hasn't spread) but he said to dad if he did wait until it became painful it might be too late to have chemo. So we have an appointment in 4 weeks dad has to make his mind up. He also made sure dad knew what to do if he became jaundice again - contact directly the dr who fitted the stent!

Then we went to see the urologist who said the scan showed it might be another cancer on his kidney it would be a primary but said the PC was most important. Dad told him he had been getting up 5 times in the night to go to the loo. So dad had to drink a jug of water and they measured his flow and examined his bladder after urinating. The urologist stated the excess bile may irritating his bladder. He gave him some tablets to try and reduce the need to go.

Edited January 30, 2014 by Janiebobs

[J_T]

Hi, I'm in Cumbria too and Ray went to Blackburn for stent surgery and XX for chemotherapy. Your onc is disagreeing with the gastroenterologist then and saying the kidney lesion is not spread from the pancreas? What about the intestines problem? Sounds like your dad's cancer has metastisised but what do I know? Four weeks seems a long time to wait too even though you have to wait for bilirubin levels to drop. If your dad is keen to get chemo started I would question that. On the other hand your dad may decide on no treatment at all and that's his decision. I wish your dad the very best whatever he decides.

Julia

[PCUK Nurse Dianne]

Hi Janiebobs,

Welcome to the forum, and I can see you already have support from this very supportive 'forum family'. I am sorry to hear about your father's diagnosis, and all that it involves. I would like to email you independently of the forum just to go over a few tips that may help.

For anyone who does wish to contact us, our email is: support@pancreaticcancer.org.uk and our support line is open between 10am and 4pm Monday to Friday. Please feel free to call us if we are ever able to support and help you.

Kind regards,

Dianne

Pancreatic Cancer Specialist nurse

Support Team

[Janiebobs]

Thank you Julia my dad lives on the west coast. Yes the two professionals disagreed but no mention was made about the intestines on Tuesday. The original CT scan was down in Manchester and Cumbria professions say it is not that clear. He had a smaller scan on his kidneys and one dr said it was a cyst and the other said it was cancer but it was another primary and the PC was the one they need to deal with now.

I got the impression they wanted my dad to build himself up as he is so frail! I will encourage dad to go back to his GP when I go back up at the weekend.

Thank you Dianne for your informative email.

Jane

[Janiebobs]

Dear All,

My dad has had his best week since the diagnosis. His stent has worked and his jaundice was down to 41 so he is much more comfortable. He saw the oncologist who said there had been a meeting and gastriologist (sorry about spelling) who had fitted Dad's stent had been enquiring at the specialist hospital if an operation was feasible. The oncologists advised caution and talked about survival rate and my Dad's age and health. The oncologist and dad talked about chemo and as dad is going away this weekend they decided to start the week after next.

Though he had a slight set back he has had constipation since being diagnosed but became loose for a couple of days which made him very low as he thought it was the next stage of the illness. The oncologist was able to reassure him and encouraged him to take more creon than the 3 he has been diagnosed with daily especially if eating fatty foods.

He has had a swollen ankle and the oncologist examined it and said he didn't think it was flabitious(?)

I wanted to ask everyone some advice my dad has a rash on his forehead when reading the side effects of creon it does say 1% can suffer from a rash I wonder if anyone else had and did they use anything to help.

Many thanks

Jane

[Slewis7313]

Hi Jane, it is good to hear that things are settling down with you Dad. As far as the Creons go, I have been taking them for 14 months now and have had no noticeable side effects. I am sure however that others here will comment and may be able to help. I also had GemCap (Gemcitibine and Capecitabine) chemo for 4 months and again had only a few side effects, namely a rash on my stomach which was cleared up with anti histamines and was sick on 2 occasions. All in all, it was not bad though I was very tired for around 12 hours after each infusion.

I hope all goes well with the chemo and that your Dad enjoys his weekend away.

Steve

X

[Cathy]

Hi Jane

Sorry, I can't give any advice but I do recollect others on here reporting a rash which went.

Best to ask the nurses on here as they would undoubtably know if this might be a possible cause.

Best wishes

Cathy xxx

[Janiebobs]

Hi All.

I thought I would bring you up to date with Dad's treatment. He has just completed his second cycle of gemcitabine he is coping well and although he seems to have become frailer and is sleeping more often, he is now in better spirits and feels the chemo is giving him more time. Luckily he is eating well (suffers from constipation) copes well with creon and his blood sugar level is under control only spiking slightly when he has 'pensioner special' which he enjoys weekly. He isn't in pain however he has been having problems with his lower legs swelling. He had antibiotic a couple of weeks ago which seem to help however since finishing the course, they have ballooned again. His district nurse has measured him for support stockings and I am encouraging him to see his GP on Monday.

After reading other posts about poor care which some other PC patients have received I realise how lucky Dad has been with his care. Unfortunately I live a 3 hour drive away from my parents so I don't see them as often as I would like, though my own family and work have been very supportive when have gone north for long weekends.

[PCUK Nurse Jeni]

Hi Jane,

Thanks for the update. Good to hear that your dad is coping well enough on the chemo and has a good appetite.

The leg swelling is probably from the Gemcitabine, as this is a well known side effect from this drug.

Make sure that he elevates his legs when he can - if possible, equal or higher than hip level, in order to facilitate drainage, but whatever he can manage. Also, when he is asleep at night, if he can put a pillow or cushion under his feet and ankles, that will help. (make sure it is not a bulky pillow, as you don't really want it putting pressure on his calves either).

If he mentions this to his oncologist the next time he sees him, they may give him some tablets which help excrete excess water as well.

Kind regards,

Jeni, support team.

[Janiebobs]

Hi Jeni,

Thank you for the advice. His district nurse is getting him a support stocking and his GP prescribed an antibiotic and some ointment. He is seeing the oncologist tomorrow so I will remind him to tell him.

Jane

[Janiebobs]

Dad had a scan last week and it was good news we were told that the tumour/mass had not grown and remained stable. Though Dad had missed the last 2 of his gemcitabine chemo sessions (3:2 and 3:3) due to low blood count (neutrophils 0.9) . He is still got active cellulitis and inflammation in his legs. On Wednesday he started a new cycle and his oncologist has reduced the dose so that hopefully he will be able to complete the course.

My poor mam has been in hospital for the last 3 weeks with a fractured neck (she had a fall) and dad is unable to visit her often because of his immunity problems. We are trying to organise a care package for both of them then she can come home. As you can imagine it's more worry and stress on my poor Dad (and us!)

Jane

[Guest]

Hi Jane,

My dad often misses chemo due to low bloods. He has never done a full cycle. Yet his tumour on his pancreas hasn't grown and the spots on his liver have shrunk considerably, i think the patient gets very down when they miss a session as they assume it's growing. It is great news about your dad. I bet the anxiety of not seeing your mum is very hard fir him though. I think the anxiety alone can make a big impact. Really hope you get your mum home some.

Leila xx

[Janiebobs]

Hi it has been so long since I posted. Dad completed 6 cycles of Gemcitabine and his last scan his tumour has remained stable.

Unfortunately Dad's jaundice returned and after having a few infections he was admitted to hospital again and a scan revealed his stent (metal uncovered) was blocked. The consultant hoped he would be able to fit a new covered stent, unfortunately he had to order it in so the ERCP was delayed for a further week. Dad's appetite has become very small and he wasn't drinking sufficiently so we returned to A&E and while they were checking him he was given fluids.

We have started dad on Ensure high protein drinks - he wondered of he should be taking Creon?

Two days after his new stent has been fitted I can see that the yellowing of his skin has reduced. But he is still incredibly weak struggling with mobility and he seems to need to have a wee every 2 hours.

His McMillan nurse has organised the OT to see him to arrange mobility aids.

We are hoping this is a temporary blip and that his strength and mobility return.

[Slewis7313]

Hi Jane and sorry to hear your Dad has been through the mill lately, but good that the new stent seems to be clearing the jaundice. My understamding as far as the Creons are concerned is that he must continue to take them even with Ensure.....it is the only way he can get the nutritional value and energy from any kind of food. As we also keep repeating, better too many Creons than too few.....too many are harmless!

Hope things continue to improve.

Steve

X

[Janiebobs]

Thank you Steve,

Dad has had to start taking the 10,000 Creons as he struggles to swallow the 40,000.

[Slewis7313]

You can get 25,000 Creons if this helps......a little easier to swallow than the big 'uns!

Steve

X

[Guest]

Hi Janie,

If your dad is struggling taking the Creons and he needs a higher strength, he can open them up and sprinkle them onto chopped banana or apple sauce. Don't mix it, just sprinkle on top and eat immediatley after opening. It was Dianne and Jeni that told me this. Hope this helps.

Leila xx

[PCUK Nurse Dianne]

Thanks Leila,

Great support you are giving. Janie please do feel free to be in touch with us if you do need some guidance with the pancreatic enzymes. Leila is right in some respects, and we did use to say that the microspheres (the small particles inside the capsule) from the pancreatic enzyme capsules should be sprinkled on the apple sauce/banana, however it is now recommended that it is mixed in with the toppings (ie apple sauce/banana). This should help reduce the potential problems that may result from some of the microspheres affecting the inside of the mouth. It is is also important to rinse the mouth with some water to ensure that any residual microspheres do not 'get caught' in the pockets inside the mouth as these may cause mouth ulcers (remember they are quite potent as they help to break down the food).

Don't hesitate to be in touch (support@pancreaticcancer.org.uk) if you would like some help with this.

Dianne

Support Team

[Janiebobs]

Thank you all again for your support.

After dad had his stent replaced in November his jaundice has decreased but unfortunately he has more pain. Initially he was put on codeine but now he is on morphine (slow release tablets and liquid) and paracetamol. He had been put on steroids to help increase his appetite and he drinks Ensure to try and build him up.

My family went up to stay over Christmas and dad seemed much more reserved and down. On Saturday he told me he was in pain and the morphine was not helping so I took him to the out of hours doctor who thought dad had an infection and a noticed his lower abdomen was swollen and very painful when the doctor touched it. Dad got an antibiotic (he's allergic to penicillin) and he was told to take more morphine and see his own GP Monday.

However that evening dad was really struggling to drink without choking and I was worried that he was becoming dehydrated so I encouraged him to have more of his ensure drink before he went to bed. Then Dad was sick (dark brown and I could see the antibiotic had not been absorbed). So I called 111 for some advice and we got an out of hours doctor who when he saw my dad called for an ambulance. Dad had a blockage between his stomach and his intestines (I am not very sure if this has been caused by his tumour). This morning dad had a ERCP/OGD - another stent to help food leave his stomach. Dad is incredibly weak and needs nurses to help him get up out of bed and he hasn't eaten since last Friday. Saw his consultant who said barring infection and the bed situation Dad could be transferred back to his local hospital (he is currently at a hospital 50 miles from his home). We are all very worried about Dad.