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

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[J_T]

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

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[Slewis7313]

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

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[Slewis7313]

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

Steve

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[J_T]

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

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[Slewis7313]

You can get them on 020 3535 7099.

Steve

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[PCUK Nurse Jeni]

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.

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[PCUK Nurse Jeni]

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.

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[PCUK Nurse Jeni]

No problem Leila.

I think what is important for you right now is not to accept "blame" for trying to give good information. As Julia says, it could be that you need to just leave it for now, and let the dust settle, so to speak, and not mention it for a while. Take a small "step" back, although, I and others know you will always be there for your dad.

We would not normally contact someone unless they gave their permission first - usually, folk come to us (via phone, email or even the forums as you have), and we take it from there. We do not give medical "advice", as we don't have individual case notes in front of us for anyone, but we do give out INFORMATION, which is exactly what we did regarding the dose of enzymes.

My suggestion would be that you advise your dad to speak to his specialist dietitian, and get his advice that way, and perhaps then he will trust what they say. The main and most important thing here is that his symptoms are controlled, and that if he needs a higher dose of enzymes, that these are given to him.

Do give us a call if you want to chat further - easier on the phone.

Kind regards,

Jeni.

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[J_T]

So, so pleased and relieved to hear your news Leila. No wonder your dad is over whelmed he has a lot to deal with.

GPs may see one or two cases of pc in their careers and unless you are at a specialist hospital for pc Im afraid some of the medics are not that clued up as you have already found. This is why your dads doctors may not be so on the ball with all aspects of his condition. Be prepared to be the key mover and shaker when it comes to your dads treatment and dont be afraid to question decisions.

You will always get support here.

Regards

Julia x

[Slewis7313]

Hey Leila, that was obviously a painful process but great that you have finally got the right result. Please pass on my best wishes to your Dad and hopefully he will reap the Creon rewards soon!

Steve

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[J_T]

double post

[PCUK Nurse Jeni]

Wonderful news Leila! I have also emailed you!

Jeni.

[Cathy]

Hi Leila

Well done!!! Give yourself a huge pat on the back from me. I'm really impressed with how you have managed all of that and well done Jeni for coming up with such helpful suggestions...

Cathy xxx

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[marie souter]

oh leila,

my heart bleeds for you, I found this initially with my mom she would fight against anything I had researched (mostly on this site) ... the district nurses are great BUT they aren't specialists and with varying degrees of knowledge, they will normally say speak to your macmillan nurse, they or your gp can arrange for yours to visit if you do not have one yet, it eveyr much sounds like you need one)... (you do sometimes get macmillan nurses though who come out and tend to your loved one, I found I got these mostly on an evening, but that was pure luck)..My mom fought against creon as well..infact I can say if she didn't take enough she was on the toilet with a backup for days and days wherein the waste she produced was far above what she was taking in) this was due to the fat exiting the body through lack of enzymes and made mom quite sick ... my mom never took creon with tea and coffee but she would take 40,000 with a main meal (or high fat food) for eg if you wanted a cream cake 'snack' I would take 40,000 with that...a low fat biscuit I would say 1x10,000 the higher the fat content the more creon needed ... but like everyone has said u cannot overdose on this ... its not an exact science everyone is different but eventually if you persist with these for your loved one their weight will steady out and the weight loss should slowdown/stop (this can need tweaking throughout)...

One thing I can tell you .. after a coupla mths of looking after my mom I was actually more informed than my local GP .. he would ask me how things were and I would make suggestions to him .. you pick up so much listening to your macmillan specialist speaking to your GP .. they say jump the doc says how high and it pretty much turned out that way with me and my moms gp as well ... the moderators on here are amazing and can give out more specialised advice than we can they are amazing, I would take that advice and it gave me confidence to look after my mom...we are all carers of loved ones who are passed or who are on that journey and its our own personal experiences showing here .. I am not medically trained but I did nurse my mom 24/7 for the entirety of her pancreatic cancer journey...I can tell you that you need to question everything..double check meds ... ask what they are for... your loved one wil grow confidence in you as time goes by, also as you grow confidence in yourself...my mom felt safer with me than ANYONE else ... including the medical professionals .. this was because I questioned everything and a lot of the time that changed the way she was treat, what medications she was prescribed etc, you learn to check for patterns in the way medicines work etc ... the nurses and docs arent there 24/7 unless your loved one is hospitalised and no one knows your loved one better than you, they will also rely heavily on carers information as they can only know what they have been told .. sitting down and just accepting is not the way to go ... your loved one will thank you for it eventually .. my mom used to say a lot..I wouldnt be here if it wasnt for you ... you will be their eyes and ears when they can't be... it will take time your poor dad is going through a horrific time and one of the hardest things I found with my mom was when she realised she had grown dependent on me that was the toughest time for her the loss of independence...she fought against me when I had left my entire family to move in with her for the 8 mths and 1 week she fought this horrific disease...I did become her punching bag (so to speak) for a while, where eventually I said, you are seeing me as someone who is taking away your indepence when in actual fact you 'are' dependent on me ... there are of course varying degrees of dependence and a lot of that depends on how medicines effect you .. my mom had some awful reactions to drugs .. morphine would make her hallucinate and effect her mobility to the point where she couldnt even hold her own weight sitting up or hold a cup without spilling the contents...some drugs just dont suit...and she ahd tried different drugs until we found one that gave mom a new lease of life..one wk she was as I described ... change of drugs ... within 1 week she was back to herself and out shopping ... I think though if your dad will allow you to be there when doctors are and sees that you are asking 'the right questions' thats a start in seeing you in a different light...you can't force this and its all going to be in baby steps ... once your dads macmillan nurse is there and you start sharing info with the macmillan nurse that you have gleamed from this site/moderators... then your dads confidence will only grow in new info you bring about ... I think you are doing really well considering and am so pleased Jeni was able to help out ... your dad was frightened and overwhelmed and everything was too much....you get so much info thrown at you sometimes you dont hear it all ... the doctors will go into more detail usually if you probe (no question is too silly) our gp got used to seeing me with my list of questions when I let him in .. thinking about it now I'm smiling .. if I didn't have my writing pad in my hand he would say .. no questions today? lol .. I would say OH theres always questions .... usually I would say I need this, this, this, this .. and this isnt working, whats the next step? I've been told we can try this? why havent we tried it yet? etc ... I think though you've already cracked part of the confidence barrier with your dad and am sure he'll be more ready to listen to new suggestions from you ... keep on keeping up the fight honey ..

love and hugz

marie

[marie souter]

This is my thread btw honey...you'll see my journey on here with info on the drugs problems we faced and how it was overcome ... some of the things on there might help you question when/if you face these issues yourselves .. drugs suit everyone differently its just really to let you know what questions it raised for me ... thread is 'tired' u can copy and paste the link below

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1057

hugz

xx

marie