A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Pancreas pain

Postby Didge » Tue Feb 10, 2015 5:38 pm

Ok, one for you old timers. We got the results of the CT and PET scans today. Increased tumours in liver (and tumour marker levels) but none showing anywhere else. However, he has extreme gnawing pain just under the breast bone (although not going through to back) and is now on morphine to dull it. Sounds familiar, right? I wonder if this is a case of the scans being behing the tumour activity as we have talked about before, but wondered if anyone else has had this type of familiar PC pain but without the tumours to match. He does not take creons, but I wouldn't imagine that not taking creans could cause pain - or am I wrong? he is going to try creons anyway. Oh and they have taken him off folfirinox but will only now offer Gem/cap as they are quoting the abraxane for first line only but are recommending ablation (but not the electro one that Prof (removed by moderator) does) but the liver tumours are on the brink of being too large. Any advice, comments gratefully received as always. xx

Fifi

Re: Pancreas pain

Postby Fifi » Tue Feb 10, 2015 6:55 pm

Hi Didge,

Really sorry the tumour markers have gone up. You knew it would be bad news didn't you? Hate it when we get that gut feeling. When will the ablation take place?

Don't have advice on the other, but have been thinking about you both today. Really hope he isn't feeling to low, of course he is, but hope the fight is still with him.

Leila xx

Fifi

Re: Pancreas pain

Postby Fifi » Tue Feb 10, 2015 7:00 pm

Hi again,

Was just reading the new post on the board, and he said he had stomach pain, until he tried creon and he's now a lot better. So absolutely worth trying. Really hope it works, please let us know how he goes?

Leila xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Pancreas pain

Postby sandraW » Tue Feb 10, 2015 7:59 pm

Hi Didge,

Bloody rotten disease!! sorry the news is not so good!! Trevor too has pain but his is lower down on his left side, I have just asked him if it a gnawing pain and he said it is, today he also has pain across the top of his tummy under the breast bone, but this is a new one. Not that that helps your other half much.
As for the Creon, our Oncologist did ask yesterday if Trevor was taking the 2 x 40,000 as suggested with meals, when we mentioned the pain, he stated that pain and mal absorbption usually apply even if there are no oily stools/diarrhoea. I know your partner had a similar op to Trevor, and we are still unsure wether Trevor does need it, as if he does forget, he seems to have no ill effects, but he has just taken it as a matter of course, better safe that sorry, so hopefully when your partner starts to take it, it will improve the pain. It seems they are on similar paths, at the moment, we were told if this folfox fails, gemcap is out next and only option too, we were told ablation is not an option for us.
I hope the Creon does improve things for him, be prepared for windy times until he gets used to it though, take care and let us know how he goes sandrax xx

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Pancreas pain

Postby jay » Wed Feb 11, 2015 9:31 am

Sorry the markers have gone up Didge,
Thinking of you both,
love Jayne
x

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

Re: Pancreas pain

Postby Didge » Wed Feb 11, 2015 9:44 am

He is now wondering if it could be a stomach ulcer. Sandra, is Trevor's pain explained by tumour activity on the scans? It's puzzling us at the moment and I think it's puzzling the oncologist too. But as we all know, collectively we have more wisdom than any oncologist on earth!

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Pancreas pain

Postby sandraW » Wed Feb 11, 2015 12:52 pm

No Didge, like you just in the liver at the moment, one lymph node in the pancreatic bed is enlarged, but that's all, we have only had C/T though, no PET scan.
Trevor was diagnosed in January 2012 as having Diverticulitis after a colonoscopy, they found a thickening on his pancreas on that C/T but we were not told about it, we have never been sure wether the pain T had in his left side was down to the Diverticulitis or was linked to the tumour in his Pancreas. Hope you get something sorted for the pain soon, trouble is the GP's tend to put everything down to the cancer, we don't bother with ours.
T seems much improved today, but says the pain is there in the background. I agree about the wisdom our oncologist nods a lot when I ask him questions, T gets a bit cross when I remind him of different things that have happened, when he is telling/asking things but as I say they have hundreds of patients I only have one to look after and I do all I can, Hope someone can give you more help but the problem is we are all so bloody different in how we show symptons. love to you both sandrax

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: Pancreas pain

Postby SusannaUK » Wed Feb 11, 2015 4:44 pm

Dear Didge,

I am sorry to read the bad news about the tumour and that the tumour marker has gone up. I am thinking of you!
I hope to meet you soon again and catch up with you.

Love,
Susanna xxx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Pancreas pain

Postby Cathy » Sun Feb 15, 2015 5:41 pm

Hi Didge,


I'm sorry to hear this. I'm afraid I can't offer any advice about the pain but it doesn't sound like the sort of pain that would be caused by needing to take creon but it could be an ulcer. Jonathan was on lanzoprazole for quite a while before his diagnosis which worked wonders for him (he didn't have an ulcer but did have acid reflux which gave him pain).

Something like an endoscopy might be helpful if you do think it an ulcer.

Hope you manage to get to the bottom of it soon. Keep pushing for answers.

Thinking of you

Suzanne... Lovely to hear from you :). I hope you are managing ok with those two boys of yours

Cathy xxx

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

Re: Pancreas pain

Postby Didge » Mon Feb 16, 2015 11:17 am

New problem is confusion and unsteadiness on his feet. This was partly (possibly) explained by dehydration and a night in hospital followed but I am worried now that there could be a brain tumour although I know these are uncommon with PC. Pain seems to be better than it was though!

Fifi

Re: Pancreas pain

Postby Fifi » Mon Feb 16, 2015 11:38 am

Could he be anaemic? Dad has spells where he is quite unsteady on his feet, and does get very confused. The hospital tells us it is anaemia. I would ask for him to be checked for this.

Leila xx

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

Re: Pancreas pain

Postby Didge » Mon Feb 16, 2015 12:26 pm

Thanks, Leila. He had full blood tests last week and again on Friday at his local hospital where his gp sent him. I'm hoping it's not something in his brain, obviousy, but if not, what is causing this? Have tried ringing the nurses but no answer and have to go out briefly very soon so am quite worried about leaving him. He's in bed at the moment but who knows where he'll be when I return! Thank god for this forum which kind of keeps me (and other, I hope) sane in this nightmare. xxx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Pancreas pain

Postby sandraW » Mon Feb 16, 2015 4:49 pm

Hi Didge,
Trevor has some degree of unsteadiness due to the oxaliplatin but only rarely, dehydration can make you very unsteady, but I would have thought they would have rehydrated him if he was in hospital, glad the pain is better at least, hope he goes on ok, let us know, take care sandrax xx

Go green sue
Posts: 38
Joined: Thu Jul 17, 2014 10:41 pm

Re: Pancreas pain

Postby Go green sue » Tue Feb 17, 2015 8:27 pm

Hi Didge, sorry things aren't going well for your fella. I just wanted you to know I am thinking of you . You gave me some comforting advice before my distal pancreatectomy last august and that meant a lot to me. Fortunately mine was an IPMN which was benign but I have my follow up scan next week. They are being careful with me as my mum and her dad died of this evil disease
Hope things settle back down for you Sue xxx

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

Re: Pancreas pain

Postby Didge » Wed Feb 18, 2015 6:49 am

Thanks everyone. He is feeling very down at the moment, like it's suddenly hit him what I've been living with these last 18 months! off to the hospital for gem/cap in a moment but I'm convinced he should now be on abraxane (or even back on folfirinox) but they are now playing the 'first line only' in spite of telling me when we started folfirinox that they could 'absolutely' use abraxane later if they wanted!