A forum for family, friends and carers of pancreatic cancer patients

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Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Veema » Sun Feb 12, 2017 8:39 am

Nige had the ascites (fluid) for several weeks...and I don't know if it was it not being drained or the drain itself or maybe neither that caused the sepsis...we were just told when he went for the drain that it can cause infections and he died the following week. Don't forget, everyone is different and my husband was very poorly with the ascites. I also thought that an infection meant high temperature and he never had one...his temperature was low, but apparently that's a sign of infection too. The oncologist also said there was no fluid build up, yet everyone else could see it as plain as day. We just had really rubbish care towards the end.

We were told the chemo would help with the ascites, but by this point he was too ill to tolerate it, so maybe if your husband gets chemo, then it will control the fluid.

Have a look at my thread...it's title is ascites...try not to overly worry, just be aware.

Vx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Didge » Sun Feb 12, 2017 8:54 am

I don't think delaying the draining is dangerous but it can make an enormous difference to how the person feels, their appetite, pain etc so it should be done as soon as possible. It really is worth pushing to get it done as soon as possible. It should be a procedure that can be arranged quickly regardless of other treatment options and discussions. Xx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Didge » Sun Feb 12, 2017 8:59 am

BTW I had a friend who had a,rare cancer and in the last few months she had her ascites drained every couple of weeks with no problems. It should not cause infection any more than any other intrusive procedure but infection is always something to be vigilant about x

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Sun Feb 12, 2017 9:26 am

Thank you so much everyone who's responded. I've at least 387 supplementary questions which I'll come to in due course; but I wanted to say what a wonderful resource this is - even if none of us would be here by choice. I so value the fact people are prepared to share, advise, and simply be there.
Heartfelt thanks. x

peter2901
Posts: 8
Joined: Wed Jan 18, 2017 9:33 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby peter2901 » Sun Feb 12, 2017 7:59 pm

Hi so sorry to hear this. My advice is to chase and keep chasing . Push for earlier appointments, ring the consultants office and share your concerns . Its difficult as the specialist hospitals are so busy but it's important to get early treAtment or reassurance that a weeks wait is ok . Ask about trials that may help . My brother has pancreatic cancer , undergone successful surgery but unfortunately now spread to liver and lungs . We aren't giving up and he's having more chemo to hopefully stabilise it . He was on a trial so we had a dedicated research nurse who is fantastic and always at the end of the phone. Keep fighting and don't accept what doesn't feel right.

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Sun Feb 12, 2017 8:11 pm

Thanks Peter. Unfortunately the hospital hasn't got a specialist pancreatic cancer unit but the oncologist is a GI specialist; I'm hoping that is good enough providing I keep on top of googling and looking in here to know the questions I need to ask, the prodding I need to do. At the moment he's up and down - yesterday and this morning were good, this afternoon searing pain and needed lots of bed rest. But then he did admit to having done lots of house chores so going up and down the stairs multiple times can't have helped!

Marmalade

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Marmalade » Sun Feb 12, 2017 10:15 pm

Hi Fiona,

Is he taking Creon? My husbands pain was also worse in the afternoon as any food he had eaten was not digesting...

peter2901
Posts: 8
Joined: Wed Jan 18, 2017 9:33 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby peter2901 » Sun Feb 12, 2017 10:31 pm

Definitely ask about suitable trials . You can search these on the cancer research UK site .you can then mention these to thes consultant . And keep talking x

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Mon Feb 13, 2017 1:07 pm

Not yet taking creon - I've given him a list of all the points to ask about when he gets the opportunity, but there's only so much I can do at a distance; he's getting really stressed about lists & (probably pain and fatigue) not as pro-active and inclined to push for his rights as he would otherwise be. I had hoped he would phone this morning but I suspect he's just waiting for them (oncology team) to ring him. Waiting is half the nightmare.
Repeated thanks to all for replying.

Marmalade

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Marmalade » Mon Feb 13, 2017 1:56 pm

I'd be inclined to put Creon right at the top of the list as that will help with his immediate discomfort and allow him to eat. That in turn will help on all fronts. Could you perhaps ring his surgery or the hospital and ask someone to action a prescription for him?

I feel so sorry for him and can quite understand his stress, the palliative care team should be helping to organise these things so a call to the GP may be a good double whammy if you can Gert him/her to get a palliative care nurse round there for him to talk to...

M xx

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Wed Feb 15, 2017 9:27 pm

Ok so this afternoon Phil had his first Creon tablet, one, with a light lunch/snack of avocado and something else not very substantial. This evening he's having horrible phlegm/acid reflux and is convinced it's the Creon. I think he'd pinned his hopes it would stop his indigestion, not realising it's about nutrient absorption. I've tried to explain he's had the acid reflux before, when he hadn't taken Creon but he's quite down about it. Mind you this is only his first step on any kind of treatment apart from Oramorph for pain relief and Omeprazole for the stomach acid.... so let's hope when he gets his drain (next Thursday, a week tomorrow unless they can bring it forward) he doesn't pin his hopes too rapidly on each step. I'll be with him from Tuesday next week, for about 12 days and am trying to put processes in place to be able to go over at short notice. Hopefully chemo (single agent) will start next week too, though no date as yet.

Marmalade

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Marmalade » Thu Feb 16, 2017 12:35 am

Hi Fiona,

So sorry Dad is still having issues and has lost faith in the creon so early but it is an absolute necessity, let's hope the stent does its work real soon. I dont know what strength the creon is but one doesn't sound enough. Doctors notoriously under prescribe so check with nurses on here. You can't actually over dose. He needs to hide them if he is in hospital because ignorant nurses take them off patients and deal them out on the drug run which is hopeless as they must be with meals and snacks.

It's so difficult when they won't bother then doctor but tweaking drugs is part of a rapidly changing disease ( the rollercoaster) it also sounds like he needs more help with the reflux until he gets his stent. There are more/different drugs available to help.

M x

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Thu Feb 16, 2017 5:49 am

Thanks Marmalade. No stent (does that mean drain?) yet - a whole week to wait unless they can bring it forward. Will try to find out what strength creon. Not in hospital, at home - but I'm in Spain, he's in the UK (working to remedy that) ... nb he's my other half, not my Dad, and we're hoping we can get married before PC gets the better of him (wish they had an emoji for a laugh/cry at the same time!
Thanks for your input, Marmalade - this forum really is a godsend in a nightmare.

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Thu Feb 16, 2017 6:03 am

Of the many other worries I have, the fact he's barely eating (maybe a bowl of cereal and half an avocado in a day on a good day) really frightens me because how can his body even survive, let alone fight..... any suggestions other than the obvious 'little sips, little bits, little and often' which he finds often results in acid reflux or major indigestion & hiccups ??

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Elaine123 » Thu Feb 16, 2017 7:58 am

Hi you need to contact his GP today and ask for supplements to be prescribed......there is lots of different ones ...types....and flavours. He needs to have sustenance of some sort if he is not eating. Fi can you not employ someone from a care agency to go in twice or three times a day solely to ensure he is motivated to take a supplement and oversee his medication....that would also give you peace of mind that someone is there to notice any great changes in his condition that day. I know Pete would not have the energy or the insight into his condition to know when these changes are taking place. Oh Fi I feel so sorry for the position you are in ....would it not be better if you arranged to move back to uk for say six or eight weeks , you could enrol your son temporary in a school and you would be here to manage Phils illness. Also you will not be making good decisions at this time with regards to uprooting you and your son permantly. You may feel differently about what to do later on. I think Phil needs you now and maybe it's also what your son needs at this time is close contact with his Dad that may be one of he reasons he is a stroppy teenager right now. He must feel as though his Dad is slipping away from him and his imagination may be running riot because he is not able to be with him. Fi these are only my thoughts please don't think I am being pushy...but we are all going through this hell just now and sometimes I know I cannot see the woods from the trees until I consider ideas that are out there but stress and worry stop me seeing them.....love to the three of you
Elaine
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