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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

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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

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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

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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

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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!

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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

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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

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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

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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!

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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

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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

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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

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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

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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!

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Sorry To hear he is feeling so down Didge. It Probably doesn't help when they have the tools to do the job but can't use them because of policy.....it's absolutely ridiculous, especially when they said at the start that these options were available.


Hope he picks up and that the GemCap helps!


Steve

X

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Hi Didge,

sorry he's feeling down, I think it suddenly hits them, Trevor still deals with it by half believing that he is going to be cured. I think when your partner went on Folfirinox, Abraxane was at that time still an option, but now it has been reclassified, you can, only have it as a first line treatment. I know when we were talking about other options the Prof said the same, that Abraxane was now no longer an option for us. As Steve said its a disgrace as its all about money, when Trevor said that to the Professor though he was most upset, I think it also bothers them that they can't give the treatments needed.

Hope that the Gem/cap helps, I know he wasn't too well on it last time, but as we have all found when they go back on treatments the side effect can be so different, so fingers crossed he will be ok.

Thinking of you both, sandrax xx

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Hi Didge,

I know what you mean about him realising what you have been living with for the past 18 months, and Paul, like Sandra's Trevor was also convinced he would be cured, but I guess if that is what has kept them going it can only be a good thing. Even now Paul is asking the hospice Doctors about building him up so he can restart treatment, even though he knows that isn't really an option. It's all so heartbreaking isn't it?


On the Abraxane question, Paul had it as second line treatment, as his insurance paid. Whether it made any difference we will never know, quite possibly not, but in this situation you just want to throw everything they have at it when someone so desperately wants to live. I wish I had some words of comfort, but you are both in my thoughts and I really hope the Gem/ Cap gives you both some respite from this relentless disease,


Nikk

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Well, after only one treatment (last week) guess what? His platelets are too low again. So no chemo today. Gemcitabine never agreed with him from the start - ironically he did much better on the folfirinox. They are hoping to ablate 2 liver tumours next week but one will almost certainly be too big now and looks like the chemo option has dried up. We are still tinkering with alternative stuff but that's mainly been my input - he's addicted to McDonalds and sweets so feel like I'm banging my head against a brick wall. Anyway, thanks for all your posts - it's so comforting to know you're all out there. And I do think the 'this isn't going to get me' is a good state of mind to be in - and who knows, for a lucky few maybe a miracle will occur! And good luck with your scan, Sue. Hopefully yours will stay away and be a truly good story!

xx

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Paul's platelets were always abnormally high due to the gemcitabine, it is just so strange how it can affect everyone so differently. Mac Donald's and sweets sound a good option for keeping weight on, perhaps with healthy options as well to keep you both happy?! Really hope the ablation is an option and success, keep hopeful,


Nikki

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The weird thing is, he's actually putting on weight even though he's not eating much. And it can't all be down to sneaking junk food and sugar, as for a start he sometimes sleeps for enormous amounts of time and only manages one sandwich or 2 small snacks all day!

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ah didge sorry he couldn't have chemo yesterday.You are right about "this isn't going to get me state of mind", I was totally convinced jem was going to be in the 3% and you never know miracles can happen, I was told jem would die on the operating table by 4 doctors but he survived and lived for 3 weeks afterwards, nurses were calling him the "miracle man" and his registrar said its was his sheer determination to live,

hopefully he will get ablation next week

stay strong

sending you both my love

Jayne

xxx

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  • 2 weeks later...

following on from Steve's good news we have some 'almost' good news too. Rob had one of his liver tumours ablated this week and the plan is radiotherapy on the other or more likely conventional surgery very shortly. if this goes ahead it would mean that he was in remission although we know it would be temporary. but still! we will take what we can get x

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