Lost in a nightmare

[amanda45]

As many others before I have been wandering around the site for the last two and half weeks since my husband was diagnosed with stage 4 pancreatic cancer. Phillip,48 was a happy reasonably fit guy who went backwards and forwards to our GP for two months to be given several diagnosis - they finally settled on borderline diebetes and sent him away with a diet sheet and one of the senior partners words - your middle aged and overweight what do you expect, lose some weight and it will all go away. I then went back with him and demanded to see the senior partner and eventually got tests done which culminated one month later in the diagnosis being broken to us by him in his consulting room. I'm still not sure who was more shocked him or us!

Thinks moved pretty fast after that, biopsy, oncologist, macmillan team nurse, hickman line inserted up to now. We should be happy with this I supposed having read other posts but he is now unable to eat or drink which culminated in having to be put on a drip in a & e last week to rehydrate.

He is due to start this furry fox on 6th jan but at his present rate of deterioration it frightens me to think we won't get that far. He has terrible abdominal and shoulder tip pain and has been given twice daily 50mg mst morphine 12 hr release tablets and oramorph for breakthrough but this has caused severe constipation and we are trying and failing to get the movical down him. I have suggested a nerve block injection but have been told its too 'early' for this!

We have also been given conflicting information by different parties, first we were told it hadn't metastasised then we were told in passing it had and to the liver. I have been told that his case is being discussed by the MDT but don't get any clear answers when I ask what decisions are coming out of these discussions.

I am at a loss what to do next, he gets weaker by the day and we just sit with him offering him food and drink that we doesn't want. Any advise would be gratefully received.

[J_T]

Hello Amanda, welcome to the forum. Your story is all too familiar and lots of people are trying to bring more awareness to pancreatic cancer. As you have discovered quite a lot of GPs need to be more clued up on signs and symptoms.

With regard to the way Philip is feeling, he can come back from the place he is now. My husband was very much like that, and indeed had to get over his jaundice before he could begin his course of Folfirinox. It is quite toxic but the general consensus is that after the first couple of sessions it can be quite well tolerated. Following treatments Philip will hopefully get his appetite back, pain should become less of a problem (some dump their pain meds altogether!).

So hang on in there, hopefully the New Year will bring a happier husband.

Do contact the nurses on here for more specific and knowledgeable advice, they are brilliant!

Julia x

[nikkis]

Hi Amanda,

Welcome to the forum, and well done for posting, but I am so sorry to hear what a horrible time you and Philip are having.

Couple of things come to mind. Firstly can they try something other than movical for his constipation? It is horrible to take, and I know I would never get in down Paul, my husband! If Philip is constipated this won't help with his appetite either. Might also be worth asking about other painkillers, that might suit him better. Paul takes Abstral that he finds works better than morphine for his pain, we had to try all sorts before we found the painkiller that worked for him, as everyone is different. We have been told with pancreatic cancer your stomach may not always be able to absorb medication properly, so sometimes patches or tablets that dissolve under the tongue work better.

Has your GP prescribed any high calorie drinks? Even if Philip will only drink small amounts they can help.

As Julia says it is worth contacting the nurses here, by email or phone and they will be able to give you lots of advice. Unfortunately you often have to hassle the professionals to sort things out, but the more information you have, the more knowledgeable you sound and the more they listen! Also is there a nurse specialist at the hospital you can speak to? They are really good at making sure all the information gets through to you.

As Julia says Folfirinox is tough but most people do seem to feel better once they have started and it gives the cancer a good kicking, so roll on January.

Take care, and really hope things start to improve for you soon,

Nikki

[suef]

Dear Amanda,

So very sorry to hear your news. The fortified drinks are something to push for, just to get some nutrients into your husband. Also has anybody mentioned whether he should be taking Creon to help him digest his food?

Do contact the support nurses on this site as they give excellent advice.

Last but certainly not least, push hard to get things moving. Be polite but VERY firm. Especially with Christmas coming up, things go slowly, and time is so important with this terrible illness.

I wish you much courage, do keep in touch!

Very best wishes,

SueF

[cestrian]

Hi Amanda

The early days leading up to and following diagnosis can be horrible even with good support from your medical team. I was able to benefit from a keyhole nerve separation procedure before any chemo commenced and the relief from pain this gave me was incredible. I cannot for the life of me understand why Philip is being denied this or the injection when it can be such a boon to be generally free of pain. I was diagnosed late May, had lost over two stones and was eating very poorly as I could manage only a few mouthfuls at best and it was an absolute nightmare for my poor wife trying to tempt me with some tasty morsel that I would dismiss out of hand!!

Obviously the morphine and other such opiates such as codeine are very constipating so if his reliance on these could be reduced or even eliminated that may be helpful. suffering from this will certainly be doing nothing to help Philip's appetite. You are definitely in the right place here to get loads of useful advice from those who have experienced similar problems. As has been said do not despair as the chemo so often gives us a new lease of life despite possible side effects and the nursing teams are generally excellent at minimising these by adjusting the mix and strength of the dose.

Very best of luck and keep up the pressure where you need to!

Love and Peace

Mike

[amanda45]

Many thanks for getting back to me, Phil is taking Creons with every little bit of food but they don't seem to make any difference. He has abdominal pain all the time and feels that even after eating the tiniest bit is very full. I don't think his stomach is emptying as he vomited last night after only a very small bowl of frosted shreddies. We are seeing the chemo team tomorrow to get his hickman flushed and also to have a blood test to check on his bilirubin levels as they looked high last week, I presume that if they still are this will lead to a bile duct stent. I will also call our macmillan nurse to see if I can get any more advice from him.

We have a specialist liason nurse assigned at the hospital but she only seems to be in one day a week and our oncologist is based in Hull - 40 miles away.

Again many thanks for the info and I will continue to push to get some answers as he is just getting weaker by the day.

[charney]

Hi Amanda

God I so know what you are going through, my husband was diagnosed just over

a week ago so we are still waiting to hear what treatment he has. He is in

pain but luckily still has his appetite and as yet has not lost any weight.

He is feeling very low and seems to have lost some of his fighting spirit, he is very negative at the moment, trouble is having seen his Mum go through this just 18 months ago

he is comparing everything to her. I am hoping that once treatment starts he will feel he is doing something to fight this, everything just seems to be in limbo at the moment and with Christmas coming up, not a good time.

Big hugs to you

Cheryl x

[laura]

hi amanda, so sorry to read your post, and soi understand the shock you have both received, you really do need to be assertive with the medical people if you are not getting understandable replies, this is your husbands life they are muting about, perhaps you could ask the med folks what info they would like if it was their hubby or wife??, we have a long history on here, click on my name and you can read it if you want.

my hubby too suffers constipation, he has 40mg morph twice daily and 8 parcetamols with oromorph as backup, we use co-danthramer two every night and loads of fruit inc prunes???

the drinks bri lived on for a while were liquid ensure, fruity flavours, pot about the size of a youghurt drink, hope this helps. laura x

CHERYL, i am so so sorry to see you back on here, how devastating for both of you,if i can be of any help, please shout! my love and loads of strength to you both lauraxx

[Jwilson]

Amanda. My husbands main problem was pain control. You need the level of morphine to match the pain. You can't go from a lowish dose to a much higher one or you make the patient toxic ie over medicated, jerky and sick. Don't wait around for a week hoping it will settle. It takes a couple of weeks trying slightly higher doses as often as changing by the day. Bill took OxyContin as low as 20 mg but it want enough up it went daily to 40 60 80 until we got it matched up. The person who did all the pai stuff was a great hospice nurse that was assigned by our GP. She was the one telling the doc what to put on the script.

Does the pain go round to your hubby's back? If so maybe ask for lyrica it's for nerve pain. Bill took OxyContin night and morning, paracetamol every four hours, lyrica and oxynorm for breakthrough.

Steroids twice a day really brought his appetite back as he could eat nothing bar digestive biscuits and a yoghurt. You can also get maxolon for nausea and it's taken three times a day. What strength creon? We had creon 40,000 at all meals and snacks.

It's so hard when you are not a medically trained person but you soon learn. By the way Bill had a nerve block by endoscopy....it did nothing at all. Try lyrica and if the pain is bad phone the on call line. Do not take a sick man to a and e to wait for hours. I had to do it several times when the pain had Bill crying. They give a shot and knock them out so they can sleep. So sorry to hear of another person suffering. You lift that phone girl and get talking!

June

[marie souter]

Hi Amanda,

I am so sad for you as I always am when I see someone new come onto the site effected by this awful disease.

My mom too suffered with awful constipation the only thing she could manage at one point were docusate sodium tablets/sennakot tablets, the docusate softens and the other causes the bowels to move (u can take up to 5 docusate a day to soften)....however if your husband can't hold anything down try not to panic as he will be checked regularly there are other things they can do .. in the extreme cases enemas are given, but you will find 99% of the drugs he is given now will actually cause constipation so being on some kind of laxative is something he may be on now all the time ... (not a medic though) just experience from my own mother.

If his current level of deterioration does continue he will be assessed before anything progresses..try not to worry if they decided to hold off for another week or two to give him time to build his strength .. we were told this may happen as well (my mom ended up refusing any further treatment she never started any she just didnt want to go down that route and wasnt prepared to risk the possible side effects she 'may never have had' If he is told he needs to get a little stronger that is 100% the right thing to do for your husband xx She had 6 bad bouts of ill health (VERY BAD) where she couldn't eat/drink etc but she did pick back up and would lead a relatively normal life for at one point a good coupla mths before another bout, her pain was almost always under control ... everyone is different, your hubby could recover very quickly and be up and at em like a lot of people on here xxx The team on here are amazing and are great to turn to for advice..vent to us when you need to someone will always be here for you xx with regards to food and drink, with mom it was finding something she actually wanted, once we found that she started to build back up ... I remember clearly the frustration and worry at trying to get food and drink into her ... ice cubes, that was it(i made some with some sugar free orange dilute) she didnt want water/tea but would tolerate those if I made ice chips with them...we moved onto iced lollies, then ice cream then soup, creamed rice etc..

My thoughts are with you and the misdiagnosis you both had to deal with (my mom misdiagnosed for 2 years) and its horrendous that this is happening to you ... I truly hope he picks up soon .. hes a younger man, he will find his strength hopefully soon and get back on his feet .. will be thinking of you loads

Love and hugz

Marie (on facebook)

[amanda45]

Hi Guys

Thanks for all the advice so for not getting backtoyou but Phil was admitted to hospital yesterday when he went up to get his hickman flushed as his bilirubin levels had tripled and he was a funny colour. They now have him on steroids with seem to have perked his appetite up a bit, still only tiny little portions but anything is better than nothing. After an ultrasound today they ruled on bile duct blockage and have said that his liver function is very poor so a CT scan tomorrow has been ordered and then possible starting his chemo on Monday (23rd) although not the furry fox as they said he won't be able to tolerate it. He is very yellow and also exhausted although this may be because he can't sleep properly as the ward is very busy and buzzers go off constantly. the ward is full on very old men several with dementia who wander and shriek I would be frightened if I was him but I have been told that he was very lucky to get any bed at all and we just need to keep him in long enough to get all the test done. The palliative care team were supposed to be coming this morning to reaccess his pain relief but never turned up. My best friends mum who is a senior orthodontist nurse is now going to chase them up as she knows someone on the team. I am going to ask to see the oncologist when he visits the hospital on Thursday afternoon (he's only there two afternoons a week). I will call the nurses on here tomorrow as I can't go to the hospital before 3 - visiting hours are very strict. Again many thanks for all the advice.

Amanda

[Jwilson]

Dear God! Nightmare indeed. You need to get a good team round you and no better person than a nurse. It's hard not to worry about food. For weeks my husband survived on porridge, two digestives and a yoghurt at lunch time and that was about it. He couldn't face food at all later in the day. Maybe some ice cream. You need to pack in calories in very small amounts. You get pots of yoghurt type things called forticare and stuff that you add to milk to make shakes to sip at. There are loads of things available like that. Part of your team should be a dietician to help you. After taking steroids Bill was back onto strong flavoured things like curry!! Couldn't bear plain food. The illness itself changes your tastes. Hope today is better for you. I hate the sound of that hospital. Like you I would be terrified!

June

[J_T]

Hi Amanda, if Phil is yellow sounds like he has jaundice in which case he will need a stent so his bilirubin levels can return to normal and also his colour. This can take some time so don't be surprised if chemo doesn't start when you expect it to, they won't give it to him if he's jaundiced.

Julia x

[marie souter]

Hi Amanda

Was jsut about to re-iterate what Julia said, stent should be coming your way soon, the itch and jaundice will disappear not too long after (a few days), no wonder hes in such a state my goodness. They fit that usually via endoscopy so you don't need a general for it. The jaundice was the first indication something was wrong with my mom, a stent followed a couple of days after that.

Also June mentioned the fortesip stuff its great, they do soups as well unfortunately my mom hated all of them but my dad loved them when he had them.

My mom also had to put up with strange people on her ward. I think that is why when she was released after her stent was fitted and her meds were changed we made the decision together that there was no way she was going back into hospital....and she didn't...she did a very short spell in a hospice whilst they got some symptoms under control...but after 10 days when they said they had done the best they could I brought her home .. am pleased to say she passed away 5 wks later at home where she wanted to be. Bloody little buggar lol everytime I came home to get something for her (i stayed at the hospice) she got a family member to bring her back, I'd turn around and there she would be .. I'd have to chase her back to hospital lol ... she was so determined to be out of there ... but yeah high fat stuff is the key but its easy to say when they jsut wont eat...I really hope he gets that stent fitted soon honey ..

love and hugz

marie

xx

[InfoForMum]

Hi Amanda,

Just one very specific reply relating to your jaundice. I posted in great detail about the challenges Mum had dealing with the related itching. It was really tough at times and often you don't get much sympathy from the medical profession as it's seen as a curable incidental effect of the much bigger problem.

This post http://forum.pancreaticcancer.org.uk/viewtopic.php?f=25&t=1146&p=9381&hilit=itch#p9381 has chapter and verse on what happened and what she did about it. My first post http://forum.pancreaticcancer.org.uk/viewtopic.php?f=9&t=1137 starts the day before the post CT consultation where the first PC diagnosis was made. At that point she had quite bad jaundice she'd had for about 10 days.

There may be some stuff in one or the other that might help.

Take care

Sarah

[marie souter]

Oh meant to say mom found questran sachets very good helping with the itch x they have a sugar free variety docs prescribe them xx

[amanda45]

Hi Guys

Thanks again for all the replies the last few days have been a whirlwind Phil is now in our local hospice as his billirubin levels have gone up to 137, the ct scan showed no bile duct blockage so they are at a loss to explain why his liver is failing. They have done all sorts of blood tests but all the usual suspects have come back negative and we are now only waiting on very rare syndromes and viruses. He is eating a little but still very constipated and now yellow. His chemo was cancelled due to the poor liver function. The team at the hospice is lovely but they are now saying that is probably the secondary tumour in his liver reacting at a microscopic level and that unless one of the blood rests shows something there is nothing more they can do. I am terrified and still in shock from the diagnosis which was only 4 weeks ago. They say that if chemo cannot be started he has only weeks. If any body can come up with a reason to why this may be happening please respond. Thanks

[karen17]

Oh Amanda I don't have any answers but wanted to send my virtual support to you. My heart goes out to you both. Hopefully the pain will be controlled whilst in the hospice and you will be receiving lots of support. Accept all the support on offer and contact the specialist nurses on this site for further information. Thinking of you and sending big hug.

Karen xx

[cestrian]

Dear Amanda

So sorry to hear of this latest complication that Phil is suffering - this damned disease is so sneaky. It invariably seems to be some additional infection, growth or whatever that gives us major problems. For instance all my own tumours have been stabilised apart from a little blighter in my lung that had grown on the last scan I had and has caused a small amount of fluid. I asked my specialist why this one was not responding to the chemo and he explained that sometimes lesions can mutate and thus the chemo that deals with the other tumours fails to control the mutated lesion.

I do sincerely hope that they can come up with the reason for Phil's problem but I guess that this time of year resources will be limited - best of luck to both of you. We are all sending our love and support and praying for better news for you.

Love and Peace

Mike x

[Cathy]

Hi Amanda

I am so sorry to hear of these complications. It's such a difficult time of year, not only as everyone else seems to be having such a great time (not necessarily so) but everything seems to go so slowly as well. My partner was diagnosed around the same time last year.

Like Karen I can't offer any answers but wanted to post something to you and to say that I hope you are getting lots of support yourself and that they can get to grips with this current problem and get Phil on the road to being able to start treatment very shortly.

Cathy xxx

[J_T]

Amanda, just wanted to add my support along with the others.

Hope Phil is at least comfortable at moment and that the medics can sort out his problem.

Sending you some virtual hugs.

Julia x

[marie souter]

Hi Amanda,

How is Phil doing? Have been thinking of you over xmas... I do hope they find out what is causing his problems and soon for you all xx

Thinking of you

Marie

xx

[amanda45]

Hi Guys

We had a meeting today with the palliative consultant up at the hospice and she has organised more blood tests an ultrasound and an appointment with the oncologist for next Thursday. Phil continues to deteriorate daily and is now up to 60mg of 12hr release MST and oramorph for breakthrough pain, he is till terribly constipated and yellow. I have asked for a second opinion on the ct scan and ultrasound that showed no bile duct blockage as the original tumours in both the pancreas and liver where initially missed in our radiology dept.

The hospice are brilliant, so caring and helpful but all the bloods they have taken upto now show no infection and the main problem is the failing liver function for which they have no explanation. Hopefully next weeks ct will show something.

Many thanks for all the support.

Amanda

[Cathy]

Hi Amanda

Everything crossed that they do. They ought to be able to try different things for the constipation, sometimes I think they need to jig things to find the right combination... My partner has been very similar and is now on a combination of stimulants and stool softeners (senna, ducosate and movicol)... Seems to be working to a reasonable extent.

In the meantime I hope you are getting a lot of great support too and have people around to help you.

Thinking of you.

Cathy xxx

[J_T]

Hi Amanda, good idea to get a second opinion, seems odd that there is no blockage showing yet Phil is jaundiced.

Good luck at your next appointment and I do hope Phil begins to feel a little better.

We all know how tough this is for you too, so take care of yourself.

Love

Julia x