HI Im a 43 year old woman, diagnosed 10 weeks ago with pancreatic cancer. To say this was a shock was an understatement as we (doctors, family, friends and even me) believed it was a gallbladder problem. I underwent the whipples procedure which went well (though the post-op problems were a bit of a nightmare) and have just started chemo but my main issue has been regarding eating. I am getting tired of the nausea/pain/fatigue after eating even small amounts and only yesterday was finally prescribed creon enzyme tablets. Just wanted to get others experiences of these tablets as Im desparate for some relief and need to know they work....
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Hi Smiler My partner just turned 44 and had the Whipple's in Dec 2010. She is on Creon and she can not live without it. She had malabsorption when she was taking as many capsules as her specialist prescribed. This was not enough. We have experimented ourselves and we have found the optimal dose for her. She has been on it even before the surgery. She is on 25,000 IU and takes about 10 a day with each meal 2 and with snacks 1. Take a look at this as well; http://www.medicalnewstoday.com/articles/222905.php This is the latest info on a similar medication that will be available hopefully soon. You can follow my blog where I have outlined everything that went on. She has stopped with the chemo treatment after the fifth visit as Gemcitabine was not for her and we did not want to experiment with any other drug. She is feeling great ever since. You can also read about her diet that really works for her. If you are interested to find out more about any other issue please PM me. Good luck.
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Thanks for the info, really appreciate it. I had a terrible day yesterday with sickness, diarrhoea and pain following my capcitabine tabs and may not be able to continue with these, but wil continue on the gemcitabine iv for the moment. Not sure when I'll see the benefits of the creon as the effects of the chemo seem to be outweighing them but I look forward to feeling better soon.
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Hi Smiler The chemo treatment and Creon enzymes do two totally different things. It may manifest the side effect in a similar fashion but it won't prevent or affect Creon in a way of not helping you digest food better. I too am surprised that they have not started you on Creon soon after the surgery. We knew that by cutting up the pancreas it would not produce equal amount of enzymes, and by knowing what these do we were prepared and fully armed for the battle even before the surgery (2-3 days that is). She started on 4-6 capsules a day but we have realised that it wasn't enough. She is on about 10 capsules a day now and does not have any problems related to it. I told her about your experience and she said this; "...tell Smiler to carry two things wherever she goes - Creon and protein shake." Her weight is around 55kg now which is only 2kg less than before the surgery. She has been taking sugar free mass gain high quality WPI protein 3x a day and has been gaining weight steadily. She has 5-6 smaller meals during the day and has a good appetite especially since she stopped with the Gemcitabine treatment. She walked for an hour today and felt like doing some easy crunches and dips after that. Something she could not or would not feel like doing when she was undergoing the chemo treatment. How is your experience with Gemcitabine?
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Hi there Hope you and your partner are well. I finally took the opportunity to read all your blogs from the beginning and it made interesting reading. Some of what your partner has gone through rings a bell, but, luckily, my symptoms don't seem to have been as bad. My third week on gemticabine was pretty bad though. The first couple of days were not too bad, but by the end of the week, I felt like I'd just had enough of the pain and nausea. I was so glad to have this week off from treatment but I'm sure I'm going to feel so anxious by the time it comes round again. It was a brave but very understandable decision to come off chemo. I think only those going through it can make the choice but my worry would be that I would feel everyone else would think I was just giving up. Has she had any responses like that or has everyone been supportive? If you read my blog, you'll see that I am in a more positive frame of mind having discussed all my feelings and emotions at last with my partner and am trying hard not to get down again (though of course it'll happen!) Both that and the lack of chemo this week has made this an enjoyable week, even managing to go out for a full day with a friend- something I haven't been able to do so far due to the nausea. Look forward to hearing from you
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Hi Smiler Thanks for the info. I have been closely reading your posts. To answer your question I must say that both of us, my partner and myself, are very resilient individuals who really do not care what others may have to say or think. We do not share much of private stuff with our relatives or friends. Our business is our business only. If we feel like sharing some info we share what we think is appropriate. She does not have anything to prove to anyone so in whole honesty we never put it the way you've described it. I am keeping a close eye on everything new re; PC. Even today there is some more news about a diff. chemo treatment; http://www.medicalnewstoday.com/articles/225130.php We will discuss it with her doctor the next time we go to see him, and only if it is a worthwhile solution she may consider it. Apart from that, she is in a pretty good shape ATM. Just before the surgery she was 57kg. Today she was very close to it. (56.5kg) She is pain free and getting stronger. Fatigue is still an issue but if it is all she needs to manage in the future she may consider herself very very lucky. Overall, she is religiously keeping taps on her diet, exercise and rest....and stress levels. That's pretty much it. At this stage we have no complaints however we have our fingers crossed :) I hope you too recover well after you complete your treatment...fingers crossed for you too. P.S. (She felt a bit down the other day because a person she shared her hospital room with died. She did not die from cancer itself but from pneumonia which was the chemo side effect. I am glad she has decided to stop with the chemo.)
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