Creons, Nurses, and Here. I'm at a loss.

[Guest]

Thank you all so much.

Appreciate your thoughts so much.

Leila x

[PCUK Nurse Jeni]

Hi Folks,

Thanks for all your support for Leila and her dad.

Just to clarify something - the pancreatic enzymes will help with diarrhoea if the cause of the diarrhoea is pancreatic enzyme insufficiency. One of ther reasons you get diarrhoea with this disease, is that there are insufficient amounts of enzymes to break down and digest food, and its the fat content which is not digested which causes the diarrhoea, and often steatorrhea, when the amount of fat is very high (and you see this in the stooles or toilet pan - sorry for the subject!). But, yes, enzymes WILL help the diarrhoea, but in the case of Leilas dad, we have had a good exchange about this, and further investigations, hopefuly, will be done.

Best wishes all,

Jeni.

[Cathy]

Hi Leila

You mean he hasn't been to the loo?

Cathy xx

[Guest]

He's been to the loo. He has to take 8 of the 40,000 creons and he is now going once a day, and that has been for 2 days, so hopefully we have got somewhere. He's lost more weight though, 9 and a half stone now.

Cathy, I've wanted to get a private message to you, but don't know how to. I feel like there is something I should explain to you, because you have been so good to me. If you know how I can do this, and of course, if you don't mind, then I would like to please.

xx

[Cathy]

Hi Leila

If you email the nurses on this site they will let you have my email address. Of course I don't mind.

Hear from you soon

Cathy xx

[Guest]

Thank you Cathy. I have emailed them.

xx

[Guest]

My dad is so much better now. He has had his 2nd dose of chemo and trial/placebo drug. The first lot he had, made him feel quite poorly and he lost his appetite. He is now 9 and a half stone. They gave him 75% chemo last week and he feels good and he appetite never went this time. He was talking to a lady there who was having chemo, and she told him to stop eating chicken, like she guesses everyone is telling him, and to go get a steak! First thing Thursday morning he went and got one, and he was home and back before 9.30am!

His diarrhoea has eased off loads, it is now nearly 3 days since he had diarrhoea which was just yellow liquid. He goes once a day now and it soft stools. The problem all along, it seems, is he just needed more creon. He has to have a very high number of them. I spoke to the hospital staff and asked if they would keep telling him this. You see, my dad just sees that one pill is 40,000 and he just sees that as a big number, regardless of the job they have to do. He has 8 of these, even with just 2 slices of toast.

I called him yesterday morning and he was in a brilliant mood. The diarrhoea stopping has done absolute wonders for him. He was also worried about money, and I found a Macmillan benefits advisor for him, and that is all sorted now. Another weight off his mind. He doesn't have to pay hardly anything to anyone now, and they need to backdate him money. It is such a relief for him.

He also told me that I can't talk about cancer, only on a Tuesday ( chemo day ). He said he wants to be normal. He is doing pretty good. As far as I know, he only has pain in his back, apart from that, and of course the weight loss, they are his only symptoms, so far.

His latest CT scan is the same as it was in January. His CA19 markers are currently 2587, which I am hoping will start to come down.

xx

[nikkis]

Hi Leila,

That is such good news that you Dad feels better, must be a sign the chemo is doing something.Hopefully now he has the diarrhoea under control he will start to put on weight. It is really useful to know that he takes that much creon and it works. Paul normally takes 3 with a meal and sometimes still has loose stools, so I have now suggested he takes more!

Take care,

Nikki

[Guest]

Thanks Nikki,

Yes, tell him to take more. I think they see the high number and it kind of puts them off. The staff at the hospital have been saying to him that everyone is different, some people only need 2 and others need 10 maybe more. They have kept on amd on at him, and finally it is sinking in. If he stools are yellow, then the creon isn't working. My dad got so depressed, thinking he was the only one, and that he would never improve. I mention it every day to him, I know I make him mad but I don't want him to have something fatty amd not compensate for it with the creon. Hope Paul listens more than my dad does!

xx

[J_T]

Glad to hear your dad is feeling better

Ray and I both hated the word 'chemotherapy' so we shortened it to 'therapy', sounds daft I suppose but whatever helps, helps!

Julia x

[Guest]

Can I please ask anyone, in your experience, do you find having soup makes diarrhoea worse?

My dad was told not to drink anything, especially hot liquid, an hour either side of food. When his appetite is very low, he will have soup, and it is soup what comes out of him within a hour after eating. I've said not to eat soup, but he tells me I don't understand how hard it is. Of course I don't, but I just try to help.

X

[Cathy]

Hi Leila

In short, no (sorry). But I'm interested why he was told to avoid hot drinks. If the feeling was that this might exasperate diahorrea then I understand why but I haven't heard this before.

The nurses on this site I'm sure will know. I'd just drop them a quick line to ask? The eating thing is so hard isn't it? If all you really fancy is soup then that's what you will have.

Best of luck

Cathy xxxx

[Guest]

Cathy,

They said it is too much for his stomach to handle. This was his dietician. My dad didn't like her much, and felt she didn't understand his problem. The eating is incredibly hard, if we could just sort this one thing out, it would make such a huge difference to my dads quality of life. His money worries are sorted, Macmillan benefits advisor has sorted everything for him. Now he just wants to go out with his girlfriend and enjoy time together. All he wants to do is to leave the house. I feel incredibly useless.

xx

[Guest]

My dads CA1999 levels have come down. They tested it after only 2 chemo sessions. It has come down by 524. The number is now 2063.

Is this a decent amount?

I am quite pleased but not sure if I should have expected more or less.

Thank you

xx

[Didge]

As far as I am aware it is individual as a marker. So if 2000 or 200 is high for you then they will use that as the standard. So my bf's was 150 before op so that is the marker they use for him. If it's come down by 20% then that must be good news and it is that which you look at not the actual number.

[Guest]

Thank you.

Still nothing is working for him. This is dreadful. I can't begin to say how awful this is. For having stage 4 pancreatic cancer, my dad is in good health. He has no pain, he has the most amazing appetite. Every time I speak to him, he has either just eaten, or about to. Yet he is trapped, and is losing weight at a very drastic speed. He is 9 stone now. Last Wednesday, he was 9 stone 9.

No one knows what to do to stop his diarrhoea. No one. He can't drink, because he is worse with fluids, the minutes he sips water, he is on the toilet. He said he desperately wants to quench his thirst, but he can't. He sees the doctors, the oncologist and the dieticians, and the minute he says nothing works, they shut up and send him home. They do not know what to do to help him, so they ignore him.

My dad is 6ft, and 9 stone is unacceptable. He is so well besides this, I just want someone, just someone to stop the diarrhoea so he can enjoy life, instead of crying at home.

I just want help.

[Didge]

Would it be possible for him to be fed intravenously for a while so that he gets nutrients and a rest from the diarrhoea? That might be a holding solution while they try to find something which will work?

x

[Guest]

They did that when he was in hospital last weekend.

Sorry that I'm just sounding negative, but absolutely nothing works for him. That's why they sent him home, they haven't got a clue what to do. They told him creon and Loperamide works for most pancreatic patients. Great boost for him!

x

[Guest]

Well my dad saw his oncologist today. His bloods are ok and he can restart chemo tomorrow.

He told my dad that people with pancreatic cancer, take creon and Loperamide and the diarrhoea is 99% better, and then can carry on as normal in that respect. He has been told that he can't have the injection, as it is for patients with VIPoma and they don't want to treat a guess!

He also told him that he thinks the diarrhoea is a completely different problem to his cancer. He has referred him to a Gastroenterologist. My dad saw one in February who didn't have a clue what she was talking about. I don't hold out much hope, but we'll see.

I wonder, does anyone else agree that it could be a separate issue? I would have thought that if it were, then scans would have picked something up?

xx

[Bookgirl2]

Hi Leah

So good that your dad is able to restart chemo. . Afraid I have no idea re the diarrhoea but hopefully the next gastroenterologist will be able to help. Keeping fingers crossed for you. Love Susan xx

[PCUK Nurse Dianne]

Hi Leila,

Had just read your post about your father. I know you have said that your father has had stool tests done previously and tested for many things. Have they done one recently? And also have they actually considered this may be due to the chemotherapy drugs, I know you mentioned that your father is on a trial, and if the diarrhoea is worse after chemotherapy, one would assume that the chemotherapy is making it worse. Has anyone suggested it may be a side effect of this trial? Also I know we have previously talked about Questran, was there any advance on that issue?

Dianne

Support Team

[Guest]

Hi Dianne,

I emailed you about this last week, but I don't think you got it as you didn't reply?

He can't have QUESTRAN as it interferes with the trial drug. Also, diarrhoea isn't a side effect of the trial drug, so they ruled that out.

We are still waiting for results on vipoma, but his oncologist is doubtful.

His oncologist told him on Thursday that he thinks his diarrhoea is unrelated to cancer. He has referred him to a gastrolinterogist again.

Sorry this is short. I'm with my dad at the mo an I see your online so trying to be quick with posting.

x

[Guest]

Good news. Dad had results of his latest CT scan today. The spots on his liver have shrunk ' a lot '. Tumour on his pancreas is still the same and he said not to expect much change here as stable is about as good as we can hope for.

He can't have chemo tomorrow as his bloods are quite low.

I did some research and I have asked for my dad to have a lactulose breath test to see if he has small intestine bacterial overgrowth. He is going to have this when he has the colonoscopy. I am going to chase that tomorrow.

xx

[Cathy]

Hi Leila

Great news about the CT scan results. I've so pleased for you and for your Dad.

And well done on your research. I do hope they manage to get the bottom of this soon (no pun intended!!).

Take care

Cathy xxx

[sandraW]

Hi Leila,

Good news on the CT scan results, lets hope as Cathy says, they can find just what's causing

his problem when he has his colonoscopy take care sandrax