Welcome to this new sub forum

[Bee]

Hi, have just typed a reply and it has disappeared so it might appear randomly!

As Julia said there is an enzyme supplement , creon, we didn't have to have the test it was given on clinical symptoms, reduced but good appetite and dramatic weight loss. He has small tablets fro meal and higher dose ones for main meals. The creon continues regardkess of any treatment. Aside from advising us re the timing of creon and high calorie foods etc the dietician also a ranged for samples of high energy drinks to be delivered to the house, (within days and several boxes of them). There are juice or milkshake varieties, chris tried them and then we went to gp and he gets the flavours he likes on prescription. Incidentally you are now eligible for medical exemption on prescriptions, otherwise it soon mounts up.

Apologies if we are telling you stuff you already know !

[karen17]

Hi Cestrian and welcome to the forum. Dont want to repeat what has already been said about this damned disease but just to add that my husband was diagnosed with stage 4 pc which had spread to his liver. No real signs or symptoms and no pain. As said before once you see the oncologist he will probably give you options. We had 3 options - gembitcine, folfirinox or a trial. We had a week to decide and chose folfirinox after nights of researching it. The following week he started 12 cycles which have just finished this week. Although weight loss was not a great problem he was prescribed creon. This site and the nurses will be a great support and access people like Macmillan, dieticians, district nurses etc. Macmillan are great with pain relief and with looking into benefits for you. Keep posting your questions, someones always here to help whether its with tips and hints or specialist knowledge from the pcuk nurses

Take care

Karen

[cestrian]

Again many thanks all. I've contacted GP this morning but having read replies will speak to his secretary about McMillan as they are highly recommended. I just wonder if they will get involved before I have my initial meeting with the consultant this Friday.

[cestrian]

Saw Colo-Rectal Specialist on Friday, I actually thought I would be seeing Oncologist but was obviously confused. Appointment went well, I think he was relieved that I had been given the bad news by my GP. Already on the case for Creons to be prescribed and my wife delivered his letter to our GP yesterday. Appointment with oncologist will be Monday or, more likely, Monday week.

He was concerned at the pain I am experiencing and mentioned the possibility of a key-hole procedure that can help out here and reduce reliance on stronger pain killers that I imagine can knock you out a bit.

As it only involves an overnight stay he seemed hopeful this could be fitted in between initial meeting with the oncologist and commencement of chemo. We will see of course but I was quite heartened and certainly very grateful for information I have gained from this forum.

Many thanks to Dianne for her comprehensive emails that have been so helpful.

Let battle commence!!

[J_T]

Well cestrian (what's your real name? :nosey:) it sounds like you have a good team around you. Haven't heard of the op he's suggestions for pain relief but sounds like a good option.

Are they just going to prescribe Creon or have you to do the test? We've had to do the test and still don't have the results! Hoping to get them next week. Our onc doesn't think Ray needs it but we'll see.

I'm sure you'll be glad to get things moving, good luck with it.

Julia x

[cestrian]

Hi Julia

I'm Mike and I am pleased with the people that are caring for me. The Creons should be with me today or possibly tomorrow if not in stock at our local pharmacy. No mention of any tests as the specialist just did a note to my GP for him to prescribe. The key hole procedure does sound interesting but I do need to know a bit more about it.

While neither of these will treat the actual cancer I think they could help my physical condition as I have quite a bit of pain and eat poorly with other side effects this brings including loss of over 2 stones. All of this tends to bring you down so I am very hopeful that together they will bring about a big improvement to help me through whatever treatment I need to deal with the actual cancer treatment.

Luckily I have great support from family and friends

Best wishes

Mike

[Slewis7313]

Hi all, with reference to Creons, whilst I had to ask for enzyme supplements at the time of diagnosis, I was immediately given a prescription without any specific tests and was told this was the safest bet as if not needed they would do me no harm. As it transpires, they stopped my weight loss in it's tracks. I had previously lost 15Kg. That is now 6 months ago, I am still taking them and have had a modest weight gain, though this seemed to start happening after the first cycle of GemCap.

For information, I have to date ad 4 cycles of GemCap and finish 28 sessions of Radiotherapy this Friday..... Then a 2 month wait for the next CT scan.

Hope this is of use.

Take care

Steve

[Sones]

Hello

I was prescribed creon when diagnosed and yes it helped with weight gain but I wasn't told how much to actually take - trial and error I was told, "play about with it and see what works for you". That was 20 months ago and I'm still trying to find the right dosage that works for me. I tried reducing it recently but that effected toileting big time so I still take two 25000 with most meals and one tab with snacks, I have to increase or reduce depending on what I eat.. I also take two sachets of questron a day.

Sue

[KATB]

Steve, it's hugely frustrating that we keep telling the onc that other people get Creon as a matter of course but he seems SO reluctant to prescribe it and we had to really push for him to agree to the elastase test! I'm not sure what his issue is - if it could help then it's worth a try surely?! ARGH!

Kate

[Bee]

Hi, have to echo we got creon really easily and it also halted Chris' weight loss, initially stable and now he has gained a couple of kilos, although slowly.

Mike, would suggest you also push for dietician and get some high calorie drinks, great for poor appetite, hope all goes well with oncologist

bee

[PCUK Nurse Dianne]

Hi all,

Thanks for the great comments and questions about Creon, as you can see there is so much variation in management of this. As some of you have eluded to, some patients are easily able to obtain a prescription without having to undergo the stool test (called Faecal Elastase), whilst some clinicians will not prescribe Creon without the patient having this test in the first instance. Unfortunately some clinicians specifically will say to patients that they do not need Creon unless they are having diarrhoea, which is not true. There is evidence that malabsorption occurs way before patients have symptoms of diarrhoea or loose stools.

This is one area that Pancreatic Cancer UK is specifically interested in targeting, and we are having further discussions with specialists in this field during the year in the hope that we can have some uniformity in treatment regimes.

Great that you are all supporting each other, and as you can see, no two patients are the same, so it often finding out what works best for each individual.

Dianne

Support Team

[KATB]

That would be great Dianne.

My dad worries about his weight a lot and he really just wanted to get on Creon after hearing the stories on here, but the oncologist is not really budging on it. He reluctantly agreed to the elastase test so we'll see what that brings up.

Kate

[karen17]

Kate can you not get dad an appointment with a dietician either through oncology team, specialist nurse or Macmillan.

Just for info Bob takes creon 40000 - 2 with breakfast ( unless a greasy fry up then 3 ), 3 with a main meal and 1 with pudding after plus 1 with snacks unless something like fruit. He had only lost a little weight but is now regaining.

[KATB]

Hi Karen, you've just reminded me that I think Dad has got a dietician appointment but I'm not sure when. I'll check with mum!

K

x

[cestrian]

Hi All

Just collected Creons and they are the 10000 capsules. Prescription says one tablet twice a day but it looks as though most users are taking rather more than this and dosing just before and during eating. As I eat so little I am thinking of taking one before each snack sized meal that I have. Does this sound sensible to start with?

Thanks for all the help - peace and love (to quote the immortal Milligan!)

Mike

[Bee]

Hi mike, I can only tell you what my husband takes. He has two prescriptions, 10000 capsules he takes with snacks , up to two at a time, for example would take more with a bar of chocolate as its high fat. He also has 40000 capsules and takes two with every main meal. He takes them just before he eats and it has had a fab effect. Everyone is slightly different, apparently depends on how quick your stomach empties. The dietician advised just trial and error, but I am sure he said better a little too much than not enough. It does sound like a small dose, perhaps you could ask the support team??

Good luck and hope oncology appointment goes well later this week.

bee

[Slewis7313]

Just to add my (again different) bit..... I take a 40000 capsule directly before main meals and a 25000 with snacks. If you take them too early or with too much water (i was advised no more han 1/2 a glass) they can apprently wash through your system before the food which is obviously not good. I also break them open and add directly to Weetabix which seems to work well. They apparently should not be taken with hot hot drinks as this negates the effect.

A different story every time!

Take care

Steve

[cestrian]

From the comments above looks like my dosage is too low. Dianne, as usual, has been great at providing information to help me get it right. TBH although I only started with them yesterday I have not noticed any real difference in digestion and still have a lot of discomfort. I think I will need to up the dose, particularly when having fats. I did forget to take one before a rather nice slice of carrot cake so need to make sure I have at least one tablet before a snack.

Because I have little appetite most of my meals are only snack size anyway!

Thanks all

Mike

[PCUK Nurse Dianne]

Hi all,

Great to hear that you are sharing your 'Creon stories' as you can see everyone is different and variations will work for each individual. I note Steve said that he opens the capsule directly on to his weetbix. As a general rule of thumb you do need to be cautious with this, as the recommended guidelines suggest when opening the capsules the contents should be mixed with 'apple sauce or something similar' and then wash down with a drink afterwards. The microspheres within the capsule can be problematic if they remain in your mouth afterwards and can cause ulceration within your mouth.

Many people have been unable to swallow the capsule for various reasons. The other issue of sprinkling the microspheres onto the food is that they may start to 'activate' on the food before it is in your digestive system, thus not having the intended effect.

Hope you find this helpful.

Dianne

Support Team

[cestrian]

Hi All

Saw my GP this morning for review of pain control and general update. As far as Creons are concerned it does look very much like trial and error and as far as their being restricted he did say that they are very expensive - but that he was not bothered about that although it may explain some of the reluctance of others to prescribe!

I have had amazing support from the team looking after me at the Countess in Chester with the highlight being receipt of an email reply from the lead nurse, who I have not yet met, while she was on holiday. I was chasing up my first oncology appointment and she came back with details of the person I needed to speak to who was also very helpful. I am now booked in this Monday when I also hope to meet the lead nurse who has said she will also liaise with their dietician and if necessary McMillan for me. I am so impressed and comforted by the level of care being demonstrated and this certainly relieves a huge amount of the natural anxiety that you can't help feeling. I just feel that they are doing all they can to help me and that I am in really good hands.

Best wishes to All

Mike

[J_T]

Hi Mike, all sounding very positive for you. It does make you feel so much better when the wheels start turning!

Good luck for Monday and let us know how you get on.

Julia x

[Cathy]

Hi Mike

That sounds really excellent. It's great to have an advocate to take some of the frustration away with needing to talk to various people to get the care you need.

Everyone - just a general question.. do any of you NOT use Creon? I ask as we haven't been prescribed Creon. Jonathan hasn't lost much weight nor does he have issues with going to the loo. I was wondering if this was something we ought to be asking for anyway.....?

[KATB]

Cathy, dad doesn't have Creon. The onc says if he doesn't have diarrhea he doesn't need it but Jeni says this isn't true. Dad has lost a lot of weight but he's not continuing to lose it, just struggling to put any back on. I think he should have it but his oncologist is really reluctant. We had to push for him to do the test but we are still awaiting the results from that.

K

x

[Cathy]

Hiya Kate

I've seen your posts about you needing to push for it. That must be very frustrating when you know that others don't have to.

I'll make a note to ask at our next oncologist's appointment. Jonathan has lost weight but we think only as he has had such a reduced appetite more recently when he was a bit poorly. Now he's getting better his appetite has improved no end and his legs (which were affected by the steroids) are starting to build up again (it's either that or he is determined never to need me wheel him in a wheelchair again LOL)

xx

[cestrian]

hi All

A busy week with my first appointment with my oncologist on Monday followed by an appointment with the surgeon who does key-hole pain relief procedure,

Things are moving apace and I am booked in for the key-hole surgery next Tuesday and having the pre-assessment this afternoon. Mr {name removed - moderator}, the surgeon seemed very confident that the procedure will provide a high level of pain relief for me and whilst I know there are no guarantees this is excellent news,

The prognosis as far as my actual cancer is concerned was much as expected and it looks as if I will be involved in a clinical trial [Names removed - moderator] at {hospital names removed - moderator} probably in 2 to 3 weeks once a biopsy has been done. A slightly unfortunate result of this meeting was that my wife was quite upset as the penny dropped that we are talking about when not if. However she has my wonderful son and daughter to support her and after some close discussions has reverted to her "cock-eyed optimist" approach which does help me to stay 100% positive.

I am really pleased with the way my case is being handled and am so grateful to everyone involved and just hope the pain relief procedure works out well.

Best wishes to all - love and peace

Mike