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Fifi

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

Postby Fifi » Mon Mar 03, 2014 9:57 pm

Thank you all so much.

Appreciate your thoughts so much.

Leila x

PCUK Nurse Jeni
Posts: 1104
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Tue Mar 04, 2014 12:38 pm

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

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

Postby Cathy » Wed Mar 05, 2014 2:17 pm

Hi Leila

You mean he hasn't been to the loo?

Cathy xx

Fifi

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

Postby Fifi » Thu Mar 20, 2014 9:35 pm

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

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

Postby Cathy » Fri Mar 21, 2014 3:01 pm

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

Fifi

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

Postby Fifi » Sat Mar 22, 2014 11:01 am

Thank you Cathy. I have emailed them.

xx

Fifi

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

Postby Fifi » Sat Mar 22, 2014 11:15 am

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
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

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

Postby nikkis » Sat Mar 22, 2014 11:59 am

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

Fifi

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

Postby Fifi » Sat Mar 22, 2014 12:10 pm

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

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

Postby J_T » Sun Mar 23, 2014 6:49 pm

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

Fifi

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

Postby Fifi » Tue Mar 25, 2014 8:52 pm

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

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

Postby Cathy » Tue Mar 25, 2014 10:20 pm

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

Fifi

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

Postby Fifi » Tue Mar 25, 2014 10:31 pm

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

Fifi

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

Postby Fifi » Fri Apr 11, 2014 9:08 pm

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

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

Postby Didge » Fri Apr 11, 2014 10:48 pm

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.