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

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Fifi

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

Postby Fifi » Mon Apr 21, 2014 7:18 pm

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

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

Postby Didge » Tue Apr 22, 2014 7:54 am

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

Fifi

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

Postby Fifi » Tue Apr 22, 2014 8:34 am

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

Fifi

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

Postby Fifi » Wed Apr 23, 2014 7:06 pm

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
Posts: 13
Joined: Sat Jan 04, 2014 9:05 pm

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

Postby Bookgirl2 » Thu Apr 24, 2014 9:24 am

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
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

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

Postby PCUK Nurse Dianne » Fri Apr 25, 2014 3:54 pm

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

Fifi

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

Postby Fifi » Fri Apr 25, 2014 4:09 pm

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

Fifi

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

Postby Fifi » Tue May 06, 2014 8:56 pm

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

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

Postby Cathy » Wed May 07, 2014 12:03 pm

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

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

Postby sandraW » Wed May 07, 2014 8:05 pm

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

Fifi

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

Postby Fifi » Wed May 07, 2014 9:12 pm

Thank you Cathy and Sandra.

He has the camera on Monday. Not looking forward to the results, as I imagine they won't be great news, but if they can do something, then that's what matters.

( hope your husbands scan comes back ok Sandra)

xx

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

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

Postby sandraW » Wed May 07, 2014 10:58 pm

Thanks Leila, we're keeping every thing crossed sandrax

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

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

Postby Slewis7313 » Thu May 08, 2014 8:10 am

So pleased to see some positive news for your Dad and you at last. Hopefully the tests will now give the Doctor's something to work with.

Take care

Steve
X

Fifi

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

Postby Fifi » Thu May 08, 2014 8:27 am

Thank you Steve.

Was good to hear it had shrunk. Unfortunately, I wasn't there when he got them ( as they said they wouldn't be ready). If I was I would have asked by how much etc. But, I will next time. It was just so good to hear something positive, it is has boosted his confidence to fight.

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 » Mon May 12, 2014 1:29 pm

Wonderful news Leila!

Well done! And such a bonus for your dad after what he has been through.

Jeni.