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PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Live Q&A on Diet & Nutrition

Postby PCUK Nurse Jeni » Tue Nov 15, 2016 10:05 am

Good morning everyone!

Welcome to our Q&A session from 10am - 4pm today.

My name is Jeni. I moved to the UK from Ireland, in 2000. I have been working on the support service since 2010. Prior to this I worked in a busy chemotherapy unit in the East Midlands, for 9 years, covering most forms of cancers, including haematology. I also did 4 years as a clinical trials nurse, which is where I became familiar with pancreatic cancer.

It has been such a learning curve to streamline knowledge to a particular cancer, and I find that most days, we draw on our wider nursing knowledge. I am constantly learning things, and understanding them in a more in-depth way.

Outside of work, I am very involved in my church, love walking with my Whippet, Alfie, and spend most weekends helping look after my 2 year old grandson, who is the light of my life!

Today we are going to focus on questions about diet & pancreatic cancer, including the use of Pancreatic Enzymes.

I look forward to answering your questions!

Jeni Jones.
Pancreatic Cancer Specialist Nurse,
Support Team.

Peter&Mo

Re: Live Q&A on Diet & Nutrition

Postby Peter&Mo » Tue Nov 15, 2016 11:40 am

Good morning Jeni.

Peter weighed 12st at the beginning of this year, before we knew he had any PC problems. He is 5'7" and he should really be 10st 7lbs. I put him on the 5/2 diet and by June he was 10st 8lbs.

Then in July his already present fatigue became more obvious and he had some abdominal pain, so we went to the GP who though he may have an ulcer, took blood tests and checked his heart. (He had 2 heart attacks 50, yes fifty, years ago). The rest is on the forum.

At around about the time of his diagnosis he began losing weight quite rapidly, and went down to 9st. With the advice of the PCUK helpline he has regained some of this lost weight and yesterday morning was 11st 2lbs.

He is due to start Gemcitabine on 23rd of this month, and I would like him to be just a wee bit heavier in case he suffers D & V from the chemo. He, however, preferred his svelte new figure, and doesn't want to gain any more weight.

It's all in you hands now Jeni - should he stay the same, lose the 'excess' 7 lbs, or pile on a bit more ? He is now using insulin for recently diagnosed Type 3.

Best wishes, Mo

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Live Q&A on Diet & Nutrition

Postby PCUK Nurse Jeni » Tue Nov 15, 2016 12:04 pm

Morning both!

Just about still morning!

Thanks for the question Mo.

There would have been a lot going on in terms of weight loss with Peter, especially in terms of the diabetes and also, exocrine insufficiency.

Most of the time, when you start to correct malabsorption, through using pancreatic enzymes, you can end up with blood sugar levels being higher for a period of time, because, naturally, you are absorbing more food. This tends to plateau out, and you get to a stage where they become stable. I know that Peter has suffered from hypoglycaemic episodes a fair bit, and that he is now getting on well with managing these, largely.


In terms of the Gemcitabine, then you would not expect diarrhoea or vomiting - so, I hope these side effects will not trouble Peter. Constipation tends to be more of an issue with Gemcitabine, and more queasiness than vomiting - he will also get an anti-sickness tablet to take after the chemo to help with this. So, fingers crossed that this wont be an issue during chemo, in which case, he doesn't need to worry about gaining more weight. However, weight maintenance is always good in these scenarios, and being well nourished to help to repair any damaged cells from chemo, fight infection, protect muscle etc....

As long as he is eating well, eating regularly, managing his hypos/diabetes and taking good doses of creon, then he should be fine, and as long as his weight is maintained, and he is not losing more.

In terms of what a person should weight, or a healthy BMI, often, these are quite stringent, and don't take into account the persons build, body shape etc...They can appear quite unrealistic as well, and put a lot of pressure on people to be the "ideal" weight, and BMI. It sounds like he is content as he is, and as long as he is not losing drastically during chemo, then that's the main thing.


Kind regards,
Jeni.
Pancreatic Cancer Specialist Nurse,
Support Team.

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Live Q&A on Diet & Nutrition

Postby Justamo » Tue Nov 15, 2016 12:07 pm

Many thanks Jeni.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Live Q&A on Diet & Nutrition

Postby Wife&Mum » Tue Nov 15, 2016 12:47 pm

Afternoon Jeni

I have a question about the use of Pancreatic enzymes.

Until recently my understanding of Creon dosage was that you can't overdose. But both a recent Pan Can Action Network webinar on nutrition and Creon's own website state that there is a maximum dosage:

"Total daily dose should not exceed 10,000 lipase units/kg body weight/day unless clinically indicated"

See here:

http://www.rxabbvie.com/pdf/creon_PI.pdf

17.1 Dosing and Administration
• Instruct patients and caregivers that CREON should only be taken as directed by their healthcare professional. Patients should be advised that the total daily dose should not exceed 10,000 lipase units/kg body weight/day unless clinically indicated. This needs to be especially emphasized for patients eating multiple snacks and meals per day.

On the basis of this info my hubby has reduced his Creon slightly and fortunately hasn't suffered any ill effects.

Does PCUK have an official view on this?

Many thanks
W&M

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Live Q&A on Diet & Nutrition

Postby PCUK Nurse Jeni » Tue Nov 15, 2016 1:55 pm

Thanks W&M.

Yes, I have had a look at your link with the additional information about the product.

And there will be a few opinions on this no doubt - we have come across this during our various study days, where health professionals would be saying similar to what this product information is saying.

I also note that they refer to it as a "drug" - which actually, it is not a drug per say - its basically what should be available in a normal working pancreas, so not sure one would refer to something your body makes called an enzyme, as a drug.

Product information leaflets do provide huge detail - the clinical indication around the use of creon is that there is no maximum dose and that you cannot overdose on this. Each person also differs with regards to their requirement, and even for that person, there may come a time when what used to work, no longer works, and they need more.

As with a normal functioning pancreas, what is produced each time we eat is not what is utilised in its entirety - we produce more than we need regularly, and excess is disposed of.

We have held several seminars around this topic, and we also ensure that it is on the agendas of all our health professional training days, study days and any patient days we hold.

One of the worlds leading experts on this exact topic is Professor J Enrique Domínguez-Muñoz. Professor Munoz has written countless articles regarding this topic - just a few you can find here, however, may not be able to access full articles:

http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract

We have worked closely with Professor Munoz with regards to information, and he has also worked closely with the HPB dietitians across the UK in terms of seminars and conferences. He is an exemplary speaker, with a passion about this topic that fascinates! He regularly states that there is no upper dose limit for pancreatic enzymes, and that doses should be escalated per individual, per diet, and to mimic the normal pancreas wherever possible.

On the other hand, I have not heard at any stage about anyone who has had side effects, or issues which are significant, from taking too much creon/pancreatic enzymes.

I know W&M that you love doing your research, so i hope that you find some interesting information contained in Professor Munoz's articles, and it helps to clarify things.

Kind regards,
Jeni.
Pancreatic Cancer Specialist Nurse,
Support Team.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Live Q&A on Diet & Nutrition

Postby Wife&Mum » Tue Nov 15, 2016 2:53 pm

Thanks Jeni, that's very helpful. I'll certainly take a look at some of Prof Munoz's publications and I appreciate that medical opinions sometime differ.
W&M