creon / 2nd attempt chemo?

[hope1977]

Hi

I have not posted anything before but my dad was diagnosed in Sep with inoperable pc. He started chemo (GEM) a few weeks ago but it made him so sleepy and he felt so sick he really found it even harder to eat or drink anything. he was losing approx 2k a week and when we turned up for his 3rd cycle they felt he had lost to much weight and appeared not be reacting well to treatment. since they have upped the steriods to 8mg per day his appetite seems to have returned slightly but i cant see how he is eating enough to actally put on weight. We did eventually get the GP to give dad creon but he took it when he was hardly eating anything and feeling sick anyway. after reading the side effects he decided not to carry on so hasnt taken it for at least 2 weeks now. has anyone had any experience of creon causing sickness? it seems eveyone on this website is so pro creon so i would really like dad to try again. also after the chemo session was cancelled i called the oncologist secretary to see if we could bring dads follow up forward from the 31st dec and she told me that all appointments had been cancelled for chemo. i was really surprised as dad felt this was a life line and it was then taken away with no discussion. they have brought the appointment forward and it is tomorrow now so hopefully will know if he can start again. if i am not chasing nothing seems to get done. i almost feel with the poor prognosis for pc that you are pushed to back of the queue. any comments for creon would be great. also has anyone else started with the chemo, not reacted well then managed to have another try? thankyou. sending positive thoughts to all x

[dabber66]

Hello Hope, I am also new to this great forum, and cannot offer you any advice regarding chemo and creons, but just to say, will be thinking about you tomorrow, keep your chin up, lots of lovely people on this site. Carole xx

[suef]

Hi,

Very sorry to hear about your dad, this is such a cruel illness. Do keep on at the consultants, GP etc, you need to keep pushing them, sad but true.

I had a Whipple operation a couple of years ago and took Creon after that, made me feel very sick so I stopped but the consultant made me take it again and it has been fine ever since. I think you just need to get used to it.

Has your father been prescribed any meal replacements, such as Fortisip? These are very easy to digest and might help him put on a bit of weight.

I do suggest you contact the Support line to get more detailed advice. They are medically trained and very knowledgeable. The phone number is 020 3535 7099 or email support@pancreaticcancer.org.uk.

Take care and do keep in touch!

Sue F

[PCUK Nurse Jeni]

Hi Hope,

Thanks for posting and sorry to hear the news about how your dad is doing so far.

I will email you about the creon etc...

Kind regards,

Jeni.

[hope1977]

Thanks for your messages. dad has tried lots of the forisip type drink and the ensure one seems to be an ok one at the moment. Oncologist said ok to try again with the chemo and as as he is taking the steriods now he might tolorate it better than before.

[suef]

Glad the oncologist is letting your dad try chemo again, hope it helps him. Do keep in touch!

[Lulu]

Hello Hope, I know what you are going through, my dad was diagnosed in August also with inoperable PC.

We eventually got the creons after a fight and Dad has managed to put on 5k in weight, plus not being able to flush everything away at the toilet was a problem but the creons have solved that problem for him too.

Dad's had 5 chemo sessions so far but the last one was given when his blood count was down to just 1, and since then he has been very sick and unwell and has also started to faint as his blood pressue is very low. I'm not sure if next week's session will go ahead as he is very low just now.

The one thing about creons is my Dad hates taking pills, when you add the creons to the MST morphine etc plus anti-nausea tabs I suppose they are being asked to take such a concoction and there was a point dad said he wouldn't take the creons anymore. However, he knows himself it is for his own good and on one occasion when he didnt take his creons, he was at the hospital for a blood transfusion and forgot take any with him, he ate a plate of soup and had terrible diarrhea straight afterwards. So we think he figures his digestive system need the creons whether he wants to take them or not.

Glad you've found this site, let us know how things go with your dad, we all understand how you feel because we are all going through the same thing

Lulu x

[susikus]

Pete used to open the creon and sprinkle it onto his food - didn't taste of anything apparently - and it saved taking more pills. Might help anyone who finds it difficult to take pills 'cos they're quite large aren't they?

Sue

[hope1977]

thanks for the replies. i am sorry lulu your dad is not great at the moment. when they are having a good week it makes you feel so happy, then when a bad few days come it hits you hard again. the creon has def made a difference. he only has the 10 capsules and we are waiting for some 25 which will mean he can take less. how many thousand would you say your dad would have in one day? good idea to sprinkle to.

[laura]

hi, my hubby, bri, takes 25,000 and takes about ten a day, can be more or less. all depends on what he eats. beef, red meat is harder to digest so needs more, fruit apparenly needs none, play around you will know what suits, you CANNOT overdose, but underuse can be detrimental, hope this helps, love laura x

[susikus]

I would say Pete had about 12 a day - more or less according to what he was eating - and they were the 25,000 variety. I would echo what Laura said about red meat. It seemed to be the worst thing to digest and often Pete would be in trouble after eating it - pain or nausea or vomiting - or all three. Sometimes it was worth it apparently! But more often than not he regretted eating red meat. Chicken was often fine, and so was fish. Pete also had fresubin drinks prescribed by the GP - nice flavours - and a good add on to give protein and calories

hth

Sue

xxx

[PCUK Nurse Jeni]

Hi Hope,

How is your dad getting on with the creon now?

As Sue said, no problem with opening the capsules and sprinkling on the food, although the food then must be eaten straight away, otherwise, the enzymes will start to digest it on the plate!! Also, might alter the taste of the food if this starts happening. Some people open the capsules and put the contents onto a spoon of jam, and take it just before the meal, if this helps?

Also, important not to handle the little spheres if you do open them, as this can damage them and make them inactive.

Kind regards,

Jeni.

[AnneD]

Just a little bit more to what Jeni has said.

If you open the capsules and sprinkle the mini-microspheres on food, it is important to use acidic food, eg apple sauce or yoghurt. The little spheres have a coating which only breaks down in alkaline conditions such as in the small intestine. This ensures that the enzymes are not released too early and destroyed by stomach acid. Also, chewing will break the little spheres exposing the enzymes to stomach acid - again not a good idea.

Anne

[David McColl]

Hi all

I've found that the creon work well when taking them at the correct time with lactulose and senna tabs, as well as prosure drinks which are available in some research trials.

[hope1977]

hi

dad seems to be happy taking the creon now. i think it is making a difference as on the last weigh in he hadnt lost any weight which would have been the first time in ages.

he is fine with taking the capsule rather than sprinkle it on to.

hope you all managed to have a good xmas

x

[PCUK Nurse Jeni]

Great news Hope.

Jeni.