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

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Fifi

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

Postby Fifi » Mon Feb 24, 2014 11:05 am

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Last edited by Fifi on Wed Mar 05, 2014 7:27 pm, edited 1 time in total.

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 » Mon Feb 24, 2014 12:23 pm

OMG, furious for you. Direct the 'silly' nurse to this site, then ask her if it is silly. These nurses are specialist in the field.

Our own oncologist prescribed Ray 1 x 10,000 creon 3 x a day initially - he.did.not.have.a.clue! You CANNOT overdose on creon a normal pancreas makes a massive amount of enzymes, much more than your dad is currently taking.

Sit quietly with your dad and try to explain to him that pancreatic cancer is specialist and needs specialist knowledge. Good luck

Fifi

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

Postby Fifi » Mon Feb 24, 2014 12:29 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:27 pm, edited 1 time in total.

Fifi

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

Postby Fifi » Mon Feb 24, 2014 12:51 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:28 pm, edited 1 time in total.

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

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

Postby Slewis7313 » Mon Feb 24, 2014 12:58 pm

Leila, we seem to go round and around with this topic. Julia is 100% correct. I know from my own experience that the Creons really help, you cannot overdose from them and that if you are unsure, it is better to take too many than too few. I have been on Creons for 14 months and since surgery have continuous diarrhoea which is under control using 5 Loperamide a day along with 2x40,000 Creons with every meal. I also take a 28,000 Creon with biscuits and snacks. If the nurse in question does not know about Creons (obviously the case), she should educate herself. Soooo frustrating (especially for you).

Regards

Steve
X

Fifi

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

Postby Fifi » Mon Feb 24, 2014 1:02 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:28 pm, edited 1 time in total.

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

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

Postby Slewis7313 » Mon Feb 24, 2014 1:03 pm

Just seen your last post Leila. This really is difficult for you. Have you discussed with Jeni / Di?

Steve
X

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 » Mon Feb 24, 2014 1:03 pm

oh goodness, dear Leila its normal for your dad to have faith in his medical team. I would let it lie for now a he is so upset and clearly this discussion is not helping.

I can only suggest that you take the nurse to one side and try and explain to her that not all internet information is rubbish! Unfortunately a lot of us here become more knowledgeable about things to do with pc than our doctors! Ask her quietly to either visit the site or print out the information on Creon provided by the site and ask her to just read it and then she can say if she dismisses it a rubbish.

Such trying times, be strong. x

Fifi

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

Postby Fifi » Mon Feb 24, 2014 1:04 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:28 pm, edited 1 time in total.

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

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

Postby Slewis7313 » Mon Feb 24, 2014 1:06 pm

You can get them on 020 3535 7099.

Steve
X

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Mon Feb 24, 2014 1:11 pm

Leila,

I am composing an answer to your post and will post it soon, but for now...

We are specialists - perhaps your dad is not familiar with the "helpline" concept? Folk use these every day up and down the UK for all sorts - breast cancer, lung cancer, lymphoma, prostate cancer - and on and on. You are not just Googling - you are communicating with nurse specialists! it is very frustrating for you - perhaps your dad could contact us himself? We do see this again and again when folk are too scared to "question" the medics and think that only what they say is truth. There are umpteen folk on here who were given information such as Julia's husband was and had the wrong dose given. Steve is right. People need to be educated about these. The main use of pancreatic enzymes such as creon is in Cystic Fibrosis, and 10,000 units is a dose you would give to an infant! It is lack of education and proper updated knowledge which makes this such a difficult topic - ask your dad to speak to a dietitian - I know for certain they will not dispute the information we have given.

Kind regards,
Jeni, Support Team.

Fifi

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

Postby Fifi » Mon Feb 24, 2014 1:13 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:29 pm, edited 1 time in total.

Fifi

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

Postby Fifi » Mon Feb 24, 2014 1:18 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:29 pm, edited 1 time in total.

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Mon Feb 24, 2014 1:23 pm

Dear Leila,

I am writing this to answer you, but also, for anyone else who comes onto this site for information. It is clear that this has caused you some distress and we are sorry to see this.

I am sure that you will get a response from the wonderful “forum family” also, many who have plenty of experience of creon, dosages and self regulating the doses.
(you already have!)

First of all, as your dad has hopefully been told, pancreatic enzymes in whatever brand they are prescribed (Creon, Nutrisym, Pancrex V) are not a medication. These enzymes occur naturally in our normal, healthy pancreas, and each time we eat, several hundred thousand units of these are produced. So, in essence, we cannot give artificially what the normal functioning pancreas can produce. When the pancreas is affected by disease of any sort, this function is hindered, and not enough enzymes are produced. So, we have to “top up” the persons own natural reserves of enzymes. Research has suggested that most people taking enzymes UNDERDOSE rather than take an adequate amount.

As a charity, we employ 2 nurse specialists, both from NHS backgrounds, both with extensive years of nursing experience, but more importantly, a large amount of time in those years was spent looking after pancreatic cancer patients and their families, in various capacities (surgery, chemo, clinical trials and palliative care). We have a Medical Advisory Board who oversee our information – again, all experts in the pancreatic cancer field. We have also had our diet and pancreatic enzyme information checked with specialist HPB (Hepato-Pancreato Biliary) dietitians around the UK, and this information has been approved. We have been accredited by the Information Standard as a producer of quality, evidenced based health information.

Last July, we gathered many of the worlds leading experts in the field of Pancreatic Enzyme replacement, and had a round table discussion about the very thing which Leila’s father has encountered – misinformation and incorrect advice on how to take enzymes. This is not just a UK problem – it is a worldwide problem. Enzymes are often prescribed incorrectly and dosages are much too low for what the person needs. There are other issues around this as well. As a charity, we are working hard to educate and inform other health professionals , both within the HPB field, and those only remotely involved, as to the correct ways to prescribe and take these enzymes. We run training events and diet and enzymes are always a topic high on our agendas. This training is provided by dietary experts in the HPB field.

I would like to reiterate again that it is safe to increase the dose of your pancreatic enzymes – they are not a medication, and we can never mimic what a normal pancreas produces. Patients are encouraged to find a dose that works for them and with different types of food. If the symptoms persist, then you should get some support from your local specialist dietitian, but you can alter the dose yourself to try and find the right dose, without harm. Furthermore, there is no danger at all in taking too much – in fact, one of our leading experts says there is “no such thing as too many enzymes”. Please do not put off doing what is right for yourself, or your loved one because of incorrect information. We have many sources who can confirm that the information which we give is correct and safe. We are very happy and willing to discuss this with any health professional who wishes to educate themselves further as to the function and doses for pancreatic enzymes, and indeed, have already had GP’s phone us to ask for our advice.

We work very hard to provide accurate, up to date, evidence based information and support on pancreatic cancer, as shown above, and find it disappointing that information from the site has been dismissed in this way without someone taking the time to find out about the work of the organisation.


Kind regards,

Jeni.
Pancreatic Cancer Nurse Specialist,
Support Team.

Fifi

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

Postby Fifi » Mon Feb 24, 2014 1:30 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:29 pm, edited 1 time in total.