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Thanks Sue and Deb.

I was with Andrea till early on Monday morning when I had to drive back for work. I left her still half asleep in bed. She was sick plenty over the weekend, but had a better day on Sunday. Our friend from Shropshire has driven up to stay with her till Friday. She enjoyed her food last night for the first time in ages apparently! However, she was sick about 3 this morning. The Mac nurse has been today and is going to up the steroids rather than the antiemetics (which she now has by injection as she was just bringing tablets back up) which will hopefully calm down any inflamation and might make her have an appetite again! They seem to have, for the most part, got on top of the pain for now. This disease seems to let you get so far with controlling pain and sickness, then it changes itself so that the current meds no longer work! Oncologist appointment on Thursday. We will see if he feels she is strong enough to have chemo. There are 3 and a half stones of my new wife that were not there on the day we married 2 weeks ago! It would be great to get some of that back! Counting the hours till I can hit the motorway ang get back up there. I think I will be able to go on Friday night rather than Saturday afternoon this week.

Thinking of you all,

Hugs,

Paul

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Hi Paul - this disease does seem to be the most sneaky of monsters, looking for ways to get the upper hand constantly - I hate it! Wonderful that the nurse is continuing to also try to get the upper hand - I am cheering from her corner! Do let us know if the steroids help and she manages to enjoy and keep down some more meals. Lovely to hear that her friend is with her - I hope she enjoys that.

Keep going, Paul - we are all behind you.

love

Deb

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Hi Paul

I see on the other thread that Andrea is starting chemo - sounds like great news as I assume she is feeling stronger? Do let us know how things are today.

Thinking of you both

Deb

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Hi folks

Not long now till I can get back up there! Today Andrea had her oncologist appointment. Her lovely friend who is staying this week took her. The oncologist is going to go ahead with chemo, despite the fact that she still has some sickness. He commented that it is rare to eradicate sickness totally anyway. Andrea has lost a third of her body weight as I know is the case with some other PC sufferers on the forum. She is looking forward to having pasta tonight - I hope she manages to eat it when it is in front of her, and that she keeps it down. Steroid dose was doubled a couple of days ago, but she is sure that the first day didn't count as she vomited soon after taking them. Hopefully, the increased dose will have some effect as time goes on. Will keep you posted about the type of chemo and how she deals with it when it happens.

My thoughts are with you all - especially Sue as it is Pete's day tomorrow. I will be thinking of you.

Hugs,

Paul

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Sue, sorry for my mistake regarding tomorrow. Obviously I meant a week tomorrow. Don't seem to be able to think straight at the moment.

Hugs,

Paul

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Yes it's next week. The last week has flown by so it will soon be here. Good luck with the chemo Paul. Our experience was that extra antiemetics were needed at chemo time - don't just take the usual, add in extra and what worked really well was odantsetron. Lots of love and hugs to you, Sue, xxx

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Hi Sue and Deb. It was lovely to be together again at the weekend. I was able to stay till about 10 this morning before I had to drive back. The Marie Curie nurses covered for the district nurses on Saturday and Sunday evening. They were great and have been liaising with the DN's regarding the antiemetics. Andrea is still sick during the night - usually about 1 and a half to 2 litres. God knows where it comes from. At least it's not 10 times a day like it was before.She is still very tired and weak though. I even notice a difference in her tone of voice when she is so drained. The weight loss is frightening. Another 5 pounds gone over the last 10 days or so. Now 7 stones 10 lbs down from 12 stones originally. The chemo might begin this wednesday. If not, it will be next week. I am amazed at how long this disease is allowed to do its work before measures are taken to address it.

Bring on the weekend. It's what I live for. Thinking of you all.

Hugs,

Paul

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Hi Paul - I guess it is a balancing act trying to keep on top of the sickness and the weight loss and weakness but also to think about chemo knocking out some of those evil cancer cells. I am sure they will go ahead if they think she is up to it, not wanting chemo to do more harm than good, which can be a risk. So glad you had a nice weekend and great to hear Andrea has a dedicated team of constant support - also great peace of mind for you, when you can't be there. Fingers crossed that it is a good week.

love to you both

Deb

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Hello everyone. The chemo went ahead on Wednesday in spite of her still having some sickness. Thursday was a good day with little sickness and the pain under control by the morphine patches. Friday was not quite so goo with a little more sickness and still very drained. I have just returned after another weekend with the love of my life. She is still losing weight and the sickness has increased in both frequency and volume. The nursing team are on it and are trying an increased dose of the antiemetics.I got her to mention Creon. The palliative care consultant is being contacted by the nursing team. It seems as if they were unaware of Creon. Will it help with the weight loss? I worry because her calorific intake is probably only about 500 a day and, on top of that, she is being sick!

I am relieved that her sister and husband are there for yet another week to look after her. Today, the Macmillan nurse suggested spending time in the hospice to see if they can get on top of the sickness. She was not keen on the idea. I think she sees it as a one way street. I have to say, I felt as if I have been poked with a cattle prod.

Thinking of you all,

Hugs,

Paul

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Hi Paul

Glad the chemo went ahead - that must be a positive step but sorry to hear that the sickness continues. This must be exhausting for Andrea. Sorry I can't help with regards to whether Creon will be any help - hopefully someone who has more experience of this will know the answer, or one of the support team? It is a tricky one with regards to the issue of the hospice. I understand how going down that road can seem a negative thing but it needn't be. Don't think of it as the beginning of the end but an opportunity to take advantage of 24 hour specialist care for a little while so she can charge her batteries and gather a little strength for the on-going battle.

As always, thinking of you both and sending love and strength.

Deb

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Hi Paul

I've not posted on here for over a week as Mick also had his first session of chemo on Friday (3 chemo drugs combined) he was very sick the early hours of Saturday and then generally tired and nauseas,I think it will be a case of keeping on top of the anti sickness mess and resting.He's on a 3 month course,every 2 weeks for 3 months then a review to see what next.

We have been in touch with the hospital regarding the nano knife.After looking at his scans they have said he is suitable and to ring after he's had a scan following his 3 months of chemo.Mick was a bit disappointed as I think he thought he could have been seen before chemo but the doctor there said to have chemo first to stabilise his tumour and obviously they know what they are talking about.

Regarding Creon I would def ask for it to be prescribed Mick regained his initial weight loss before chemo by taking them to help digestion,they can bloat you a bit but he tends to take 1 with a snack and 2 with a meal,also he has some milkshakes called ensure which are on prescription,they have about 250 cal in them and can be used as a snack with 1 creon.He always takes one to bed to drink during the night.

Hope you are looking after yourself too,big hugs!

Sue

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PCUK Nurse Dianne

Hi Paul,


I just wanted to give you some advice with the Creon and thanks to Sue for the help with the question about Creon. Paul as you may know Creon is a pancreatic enzyme replacement and unfortunately is not prescribed as often as it should be. We have many calls to the support line about this. Any patient who has a pancreatic tumour and/or had surgery to bypass or removal of some of the pancreas will have insufficient pancreatic enzyme production. This is a normal process in well persons, however in those with PC and/or surgery the supply is insufficient and affects the breakdown and digestion of fats, proteins and carbohydrates. This is the usual reason why patients with PC will have steatorhoea (loose, pale or gray offensive stools that float on top of the toilet bowl and are difficult to flush away) and is a good indicator for prescribing Creon. Many patients will find that they have improvement in their bowel habit and nutritional intake and appetite within 24-48 hours of commencing Creon.


There are specifics in taking Creon, ie it needs to be taken just at beginning or end of a meal, some patients will take during a meal. Do not take it 30 mins before as you would with some other medications. It needs to be taken with food so it can act on the food at that time. There are varying doses ie 10,000mcg, 25,000mcg and 40,000 mcg. Depending on how much and exactly what the patient is eating will dictate how much Creon the patient should take, and many doctors prescribe different does. In general it can be taken as such:


- Snack 10-25,000mcg

- Small meal 25-40,000 mcg

- large meal 40 - 80,000 mcg.


As it is an enzyme replacement only, one cannot overdose on this medication, the common side effects can be bloating (although may often be due to other medication given at the same time as the Creon), constipation and peri-anal irritation.


I hope this is helpful and if you require any further advice please do not hesitate to contact the support line if we can be of assistance. (support@pancreaticcancer.org.uk)


Best wishes,


Dianne

Support Team

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Thanks Sue and Dianne for the useful advice. Just spoken to Andrea. She is so very weak and tired. It's an effort for her even to speak. Her voice has changed. Syringe driver in place for the steroids now. Anti emetics continue to be given via the butterfly on her abdomen. She was called at 10 p.m. last night by the hospital who had checked the bloods (taken by the DN's) in readiness for dose 2 of chemo tomorrow. It's been cancelled due to poor kidney reading. The oncologist wants to see her early tomorrow morning. I'm worried out of my mind.

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Thanks Sue and Deb. I'm going up on Saturday and staying till Thursday evening. However I have an early finish tomorrow followed by a late start on Thursday so am planning on whizzing up there for early evening tomorrow and driving back Thurs morning to be at work by lunchtime. Just in from work again and am going to ring her sister on the landline so as not top disturb her if she is resting. Thanks for your kind wishes. It does help. Hugs

Paul xx

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Chemo didn't happen on Weds following bloods results. Oncologist feels that it will not be restarted. Admitted to hospital with dehydration again. Small improvement after 24 hours on saline drip. Syringe driver still in place. Increased anti emetics dose. Still in hospital. Was there on Weds all day and will be back up on Saturday for a few days. I hope she is strong enough to come home after the weekend, but don't see medication in oral form as an option like last time. She just ends up being sick all over again and becoming dehydrated. Also, it's impossible to tell how much, if any, medication has been absorbed.

Keep fighting.

Hugs,

Paul

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Huge hugs and much love for you Paul. Live day by day, hour by hour, minute by minute and make the best of every one. You and Andrea are in my thoughts and prayers, wrapped round with love and care. Can you ditch work for a while? Look after yourself my friend, we're walking with you, lots of love, Sue, xxx

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Thank you so much for your kind and heartfelt wishes. I spoke briefly on the phone to Andrea this morning and she says she is feeling a little stronger. Her voice sounded more like her usual self too. I'm going up ther this afternoon and will stay till at least Thursday. I hope she is well enough to come home at some point. Saline drip has been replaced with a kind of vitamin one. No sickness since yesterday morning.

Consultant got her another CT scan yesterday of both her abdomen and her head - apparently wants to make sure it hasn't spread to her brain and is the problem behind the sickness.

Keep walking the walk everyone and stay strong together.

Hugs,

Paul

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Thinking of you and Andrea and sending you lots of love and strength. I do hope that things improve so that you can enjoy some time together - glad you are able to stay with her for a few days.

Deb

xxx

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