A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Mon Jun 10, 2013 7:49 am

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

Re: Welcome to this new sub forum

Postby Slewis7313 » Mon Jun 10, 2013 8:07 am

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
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Welcome to this new sub forum

Postby Sones » Mon Jun 10, 2013 9:47 am

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
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Welcome to this new sub forum

Postby KATB » Mon Jun 10, 2013 9:47 am

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
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Welcome to this new sub forum

Postby Bee » Mon Jun 10, 2013 3:26 pm

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
Posts: 279
Joined: Tue Aug 14, 2012 3:29 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Dianne » Mon Jun 10, 2013 3:40 pm

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
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Welcome to this new sub forum

Postby KATB » Mon Jun 10, 2013 5:22 pm

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
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Welcome to this new sub forum

Postby karen17 » Tue Jun 11, 2013 8:41 am

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
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Welcome to this new sub forum

Postby KATB » Tue Jun 11, 2013 1:06 pm

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Tue Jun 11, 2013 1:26 pm

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
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Welcome to this new sub forum

Postby Bee » Tue Jun 11, 2013 3:32 pm

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

Re: Welcome to this new sub forum

Postby Slewis7313 » Tue Jun 11, 2013 4:30 pm

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Wed Jun 12, 2013 8:45 am

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
Posts: 279
Joined: Tue Aug 14, 2012 3:29 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Dianne » Fri Jun 14, 2013 9:42 am

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Fri Jun 14, 2013 12:51 pm

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