My husbands pancreatic cancer situation

[sooty]

Hi, I have been reading posts on this forum for a few weeks now, and have decided to tell our story in the hope that someone can guide us. In Sept 2011 my husband was a fit healthy man, he was given a routine blood test to check if he had suffered any ill effects of being poisened due to his work. The tests were clear but my husband was tired and felt a little unwell. Two weeks later he had another blood test, this showed his bilirubin had risen from 35 to 644 ! he was also showing signs of jaundice.Ten days later he was referred to a specialist for a stent to be fitted in the bile duct.A blockage made this impossible so the stent was inserted via his rib cage.A scan showed a mass on the wall between the duedenum and pancreas with no sign of secondries and a whipple procedure was scheduled. Three weeks later he was admitted for the surgery although he had deteriated, the surgery failed, once the surgeon opened him up he could see that it had spread through to the pancreas, duedenum, small bowel, capilaries with spots on the liver.The surgeon did a procedure whereby the bowel was rerouted adn the liver was rerouted to the bowel forming a kind of internal loop. Ten days later he was discharged, no other treatment given, he takes 30mg morphogesic x2 daily and paracetamoland creon 4000.This was Novemeber 14th,and my children and I were told that he would not survive it to Christmas. Well , he made Christmas and even managed a 2 mile walk, he walks everyday upto 4 miles, his appetite is good and he now works 3 hours a day (laptop/advisory) 3 days a week.In the last 3 weeks his weight has dropped dramaticaly from 64kg to 58kg (by the way, he was a very healthy weight prior to his illness, around 11stone).He is getting tired more these days, we know he has defied the odds and we are so grateful to this, but what now?...what are we to expect? everyone else on the forum has had a whipple or chemo or radiotherapy, he had none,at the checkup the surgeon said a repeat scan would be pointless as the outcome is still the same, the cancer spread so rapidly in the 3 weeks prior to the surgery so I guess it is still going crazy in there.Any thoughts or suggestions from anyone would be very gratefully recieved, thankyou

[Trevor F]

See my post under Trevor F at http://forum.pancreaticcancer.org.uk/viewtopic.php?f=2&t=733.

I understand however that your husband did not have a Whipples procedure in the end. How does he look ? Does he look OK ? Is he eating well ?

[sooty]

Hi, no, no whipple , well in profile he looks the same, but face on the weight loss is obvious, his bones show through his skin all over his body, he is no longer yellow tinged (the surgeon said this would not happen due to the bypass procedure they did),although the GP said it may happen. His appetite is good, originaly on fortysips but now eats as normal and similar sized portions pre PC.He walks alot in fact has just gone off again for one.We seem to be in limbo not knowing what the future will hold , sooner ...or later ?

[suef]

Dear Sooty,

What a difficult situation for you both, but it is so good that your husband has already survived over two months longer than expected by his doctors and he seems to have lots of energy for walks. May I suggest that you call the Pancreatic Cancer support line on 020 3535 7099. They were really helpful when I had my Whipple, and they have a lot of knowledge.

I wish you much courage,

Very best wishes,

Sue F

[PCUK Nurse Jeni]

Hi Sooty,

I would suggest that perhaps you ask for a second opinion as if he is up and about, walking and working, he may be fit enough to undergo some form of chemotherapy.

This will help with any symptoms of the disease.

Please contact me via the support line for more information.

KR,

Jeni.

[sooty]

Hi Jeni, we were advised from the onset by all the medical personel involved that Chemo was not viable, at best he would survive one month longer after enduring 3 months aggresive chemo. After hearing this my husband refused the chemo as it was only prolonging the inevitable and his quality of life would be impaired by it.At the check up we asked the surgeon what to expect, what signs to be aware of, his reply was that my husband would be the first to know that things were getting worse, he would become tired and in pain. By the way from day one of feeling tired in Sept he has had no pain at all.I think his recovery from the "loop" surgery was hindered by the fact that his op site would not heal, in fact 15 weeks later we still have the district nurse coming in to dress it. I have just booked a few days away, we were told to do everything sooner rather than later, so I keep him busy by going to coastal locations where he can enjoy his walks (he says this is the only time he feels "normal").We just want more information as to how long he has... we want to plan ahead but are unsure how far ahead we have. Thankyou for your responses

[laura]

hi sooty, sorry to read your story, you havent mentioned [ i dont think] creon capsules?

these are so important to aid digestion of food and to retain goodness from meals, if your hubby is walking and working and not getting creon its no wonder hes tired and losing weight! they do need to be a strong dose and ,taken with EVERYTHING he eats, except fruit. easier said than done, but try not to focus on ""How long"" cos none of us know that pc or no pc! and that thought can absorb all your energy and stop you enjoyin the now.

take care laura x

[sooty]

Hi Laura, thankyou for your reply, yes he takes creon 4000 with everything and has done since before the surgery. We are focusing on doing positive things and socialising but at times we have to put on the practical "thinking cap" so that things are in order, we are fully aware there is no miraculous cure for him, we do not want to be caught out unprepared. My husband has a very positive attitude to the fact it is his time to go, he says he has had a good life and thats that !, very brave of him to think this way Bless him. I just dont want to think that he will be in pain as his time comes to an end, that would be unbearable for us all, I posted on this forum in the hope that someone would know of a similar situation to ours, but it seems everyone else has had surgery or chemo etc !

[lynbo]

Hi Sooty

My husband didn't have chemo or whipples, just palliative care.

Hope your bearing up, read my posts, or chat on here it's up to you, I think your husband is very brave, just like my Andy was.

Take care

Lynbo

Xxxx

[laura]

hi sooty, yes, i see from your first post that your hubby takes creon, you say 4000?, brians dose is 25,000 per capsule, he takes two with breakfast [cereal n fruit] one with piece of cake or similar, two say with sandwich, beans on toast,egg or cheese,soup, with a main meal usually two, but if its steak,beef or pork i usually give him three because the meat is harder to digest/process. he usually has a couple of mouthfulls then a capsule, then another one towards the end of the meal, this i beleive allows the enzymes to mix in with the food. is this how your husband takes his? it may be worth asking for a higher dose, you may then find his weght will stabilize. wishing you both all the very best, laura xx

[AnneD]

Hi Sooty and Laura,

I don't think there is a 4,000 capsule so it's more likely to be the 40,000 capsules.

I use the 10,000 unit capsules and take up to seven with a meal and just two or three with a snack.

Seven is 70,000 which is almost the same as Brian's 75,000.

I've always liked the lower dose capsules so I can spread them through the meal to make sure the enzymes are well-mixed with the food.

They do a very good job ( I have no pancreas at all! )

Anne

[sooty]

Hi Laura and Ann, thankyou for your replies, yes ..doh it is 40000 he takes but only 3 per day with main meals ! We did not realise he could take more, I have mentioned to him what you both posted and he has now increased his intake to an extra creon with main meals. I have read your forum pages and many many others but seems to me that we are unique in regards treatment. Purely paleative in his case.Realy his work is miniscule, a driver collects him and takes him to his office where he is there in an advisory capacity for upto 3 hours max 3 days a week.He was going crazy not working and it keeps his mind off his prognosis for a few hours.While he is still strong enough to walk etc I have again booked a few days away for us. Very little else I can do apart from care for him . Take care , Kathy

[laura]

what a difficult situation for you and hubby, perhaps you could ask for a 2nd opinion from an oncologist, they do sometimes have a differant take on situations, also you should have a specialist nurse from the oncolgy team that you could speak to, it wont change the situation but they are very supportive. tell your hubby that you cannot overdose on creon, but not taking enough will not be beneficial,

when we first saw our oncology team after an unsuccessful attemt at a whipple, we were offered a place on a trial and my husband accepted it, no promises, no expectations, possible 6months was muted, that was may 2010, chemo started june 2010 and he had 19 cycles, 3weeks treatment 1 week off, he has now been off treatment since nov 2011, scan showing all static, this is such a wicked, sneaky, teasing cancer, all we can all do is live for the day, and try to enjoy whatever that day brings,

wishing you both the very best, here to help if i can. love laura xx

[sooty]

Hi Laura, firstly I have to say we have not got an oncology team, never have had, my husband was operated on for a whipple procedure but could not go ahead with it as the cancer had spread too far, hence the loop procedure the surgeon did for paleative help only.Apart from a 12 week follow up with the surgeon and seeing our GP and the district nurses we have seen no other medics (we are registered with the local hospice but we have not needed to use the fascilities yet). Anyway, I would like some help with a problem of mine not my husbands...I saw my own GP yesterday for a checkup, have realy not felt well but nothing specific, I have high BP which as you can imagine is through the roof these days, my Doc said that I was a typical example of a "carer" and I should try to have at least one night away from home for a rest and "me" time !. How ? I would so dearly love to go and see my 84year old father who lives approx 2 hours drive from my home, I usualy go to see him every 4 weeks, have seen him for 3 hours in 9 months !. I know that if anything should happen to him and I have not seen him for so long I would never forgive myself, but ..what about my husband? I know for sure my daughter will come and stay the night at home and care for him, but should I go, dare I go, what if !?. I know this is such a trivial thing in the face of what else is going on but it realy is troubling me, I am torn between the two. I guess as my Doc said, if I go under what then so go and visit my father. Wishing you all on this forum the very best of everything.

[laura]

hi sooty, oh i so understand your dilema, should i go or should i stay,? [thats a song isnt it? how appropriate]

well if you have someone who will be with your hubby, n its only for a night or so isnt it?, then i think you should go and put your mind at rest about your dad, spect your dad worries about the situation and you!.

i know im a fine one to advise cos im nervous bout leaving bri for more than a few hours, mainly because he has a brain malfunction [m c i ] hes unable to process information unless its very precise and not complicated, and his memory bout taking tabs etc is terrible, even if tabs are on tray or table[ sometimes in his hand] i sound like a cracked record, reminding him, still needs must.

bri actually enjoys having the home to himself, as i think we all probably do , for a while. i am trying to plan 2 whole days in exeter and meet up with my sister from cheltenham, exeters about half way for us both, she wont drive that far she is 81 this year[compared to my modest72 lol] talk to your hubby see what he says? as you dont have an oncology team, try your macmillan nurses they are really very supportive and can negogiate for you with drs etc re pain control etc, ring them up and explain situation to them, am sure theyll help, which area r u from? take care love laura xx

[sooty]

Hi Laura, hope you enjoy meeting up with your sister, I hope to do the same when I go and see my father (can you believe she broke her foot the same week that my husband was diagnosed and she still in unable to drive so cannot visit me,never rains......As for my husbands opinion on me going to see dad, he is desperate for me to go, he is so worried about my stress,Bless him and wants me to go as soon as we get back from Eastbourne. Our daughter will come home for the night while I am there, she has done the medication before so I know that will be ok. My husband is not good today and has been in bed for most of it, not like him at all, seems a little breathless too !. I dont have any dealings with McMillan prefer not to, if I want medical help I phone the district nurses or the hospice, I must say I am beginning to feel very much abandoned by medics, in fact we think that as soon as my husband said he was not having chemo (following the advice of the surgeon and GP) the hospital became disinterested in him !.My own GP was surprised when I told her that we had no follow up appointments with anyone. By the way, I am a Yorkshire Lass now living in Lincolnshire, enjoy time with your sister, and best wishes to you and Brian .

[sooty]

Hi, anyone got any answers please..during the last few days my husband has become very easily tired, not walking as much as he was, appetite reduced, waking every hour during the night to urinate as drinking so much due to constant thirst. I increased his creon as suggested in the hope he puts a little weight back on !. Noticed that sometimes his speech is slurred, is this the diabetes, he takes 2 metformin a day? I have booked a few days away down south on Thursday and getting a little unsure about if this is wise although he is so looking forward to it. Thankyou S

[sooty]

Would like to thank very much Jeni the moderator who emailed me a reply to my queery, suggesting it could be his blood sugar levels and take K to the out of hours GP. I followed this advice and K was seen by the GP who then said he needed more in depth tests, Ks blood sugar reading was 26.5, apparantly this is high, his acid and keytones test were fine, his ECG showed a slight blip, chest xray clear. Today we are to attend the diabetic clinic to be shown how to administer insulin. The doctors and nurses at the hospital were brilliant and in this long process since K was diagnosed I feel I now know and understand things!. By the way, I was asked at the hospital for his "green card" ? which would have made things simpler for us, so ...whats a green card never heard of it, they also asked for his consultants name and seemed amazed when I said we are just under his own GP, is this usual. Again thankyou so much Jeni for your kind email, comforting to know you are out there, regards S

[sooty]

Saw the GP this morning as my husband was realy not well at all, apparantly his blood sugar is still way too high, a urine test showed keytones and he was admitted as an emergency to the hospital. Because of the tumour the doctors think that his pancreas is no longer producing insulin, he was started on insulin injections and so far bloody surgar levels falling hope it continues and he gets his strengh back again soon !

[laura]

hi sooty, am sure your hubby was feelin rotten, sure was a high sugar reading, bris was sky high when diagnosed, started on metformin progressed to insulin, after about 12 months, it all cleared up?, really strange, but doesnt take anything at all now, dont worry about the insulin i used to inject bri sometimes, easy peasy, and will make him feel so much better.

hope you manage to get away, but guess getting hubby better is priority!

best wishes to you both and hope things "buck up". love laura xx

[sooty]

I am sooo angry I dont know whether to shout or cry ... my husband has been in hospital for 6 days, the blood sugar levels fluctuate from 14 to 26 during the day on "18 insulin", I visited him this evening and he was complaining of pain in his right side, his tummy was very distended. I spoke to the nurse in charge of him, my first meeting with her, took me by surprise when she asked what he liked to be called ! I replied "his name". After talking about the diabetes issue I mentioned the pain he was having and how much more distended his tummy was, strange that I had to tell her what procedure he had done and inform her of his cancer, why is this not noted but what realy tipped me over the edge was her telling me he will see the ward consultant tomorrow, I said great is he a diabetes consultant or PC one, she looked rather surprised and said no he specialises in Chest complaints !! He has no chest complaint ..what good is this to us, I could cry I am so tired of batting my head against a wall, I give up ..I've reached my limit.

[laura]

oh sooty, what an awful situation, if you cant get anywhere on the ward where your hubby is, go to PALS, they are there to help you sort out problems that you need addressing, they will be based in the hospital and i think are open all day, was your hubby admitted to an assesment ward? i found things were more difficult to sort out on the two occasions bri went in, the prtoblem is they deal with all differant admittances and its usually a thruput ward, where patients then get sent to an appropriate place. if thats not the case then certainly your need of a chest specialist doesnt seem appropriate,

hope you can get some answers tomorrow, thinking of you laura x

[mints]

Hi Sooty,

I have to say I experienced something similar with the hospital when taking care of my husband.

When they're admitted they find a bed on any ward, then it's never a specialist doctor they see just one that's on call,I too found this very frustating.Once I found him left on a day ward with no-one looking after him,I really created a fuss and put a report in.

It's an added worry you just don't need.

All our situations are similar but different,but I do hope you find the help and advice you need,your local hospice, or your g.p.refering you to someone.

Wish you well.

[PCUK Nurse Jeni]

Hi Sooty,

So sorry about this.

I will email you a direct reply.

Jeni.

[davidbird]

My first post here.

My Father-in-Law (aged 82) was diagnosed late November, after many months of indigestion-type symptoms, and then sudden weight loss.

After a MRI scan, the prognosis was for palliative care only. Its now mid-March, and with various prescriptions for pain relief, anti-acids and steroids to boost appetite, all now seems stable, after what looked like a downhill slide, but was due to co-codamol inducing constipation.

GP very good but taking a background role, MacMillan Nurse is very good and now the main source of care & information.

Just today he was looking a bit yellow, and MM nurse was talking about a stent, also considering Creon.

MM nurse says that due to his age, everything slows down, as this also includes aggressive tumor growth, we may still have him for longer than a younger man.

So, no, you're not the only one with just palliative care, no chemo/radio/surgery. I'd also noticed most folk talking about chemo etc.