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What are other survivors doing about pancreatic enzymes replacement?
I am a 4 year survivor of pancreatic cancer. I have been on creon since my Whipple. It is very expensive. I talked to someone who was using Pure Encapsulation instead of creon. The formula doesn't match my creon, but it is about 1/4 the cost of the co-play on creon. What are other survivors doing about pancreatic enzymes replacement?
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Can I send you a private message about this?
Continued loss of weight and taking the smallest dose of Creon is likely the cause. An easy way to optimize Creon dosage is to use the on-line dosing calculator at pertcalculator.org. It calculates the number of capsules needed based on quantities of carbohydrates, fats and proteinin the ingredients comprising the meal.
By stating your husband is taking the minimum dosage is vague. Is he taking the lowest concentration of 12,000 lipase units or one capsule of the 36,000 lipase units?
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1 ReactionYesterday, I found in local pharmacy, 93 tablets 25000, are 112.00 canadian$. Uhhh.
Our son had a surgery in Belgrade, Serbia, Whipple, and we bought Creon there, it is around 10 US dollars per 100 tablets of 10000, 25000 is more expensive, around 15 US dollars. Here in Canada is around 50 can. dollars, Just to give you idea.
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4 ReactionsQuestion:
If the stool is a pretty good darker color ( ie seems to have enough fat in it so that it sinks rather than floats) does this indicate that the body is getting enough CREON?
My name is Mary and I’m the caregiver for Frank, my husband, who had an insulinoma tumor removed one year ago and is losing weight so much that it is at an alarming level. As is his general condition.
He is taking close to the smallest dose of Creon. His general practitioner has acknowledged she knows little about dosage and how to titrate the dosage.
Thank you, I will reach out to them Monday.
Thank you. I hope those who take Zenpep are able to use it.
Judy
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2 Reactions@ellrose45, thank for this resource. Allow me to post the link and phone number for you:
Pharmaceutical Patient Assistance Program
https://www.nestlehealthscience.us/patient-assistance-program
Phone: 855-210-6228
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2 ReactionsI take Zenpep, also. I made an extraordinary discovery. I hope you fit the criteria.
It’s called Nestle Patient Assistance Program. Your doctor will have to send your Rx to them. Address is:Nestle Patient Assistance Program.
PO BOX 66520, St. Louis, MO.
They will fill your Rx FREE if you meet the criteria. I have been getting free Zenpep for two years and counting. I got in the donut whole (I have SS) and had to pay $900 for one month, then it went back to the 300 to 400 range,
If you are interested call the Patient Assistant Coordinator, Monday through Friday. You have to renew every year with your doctor’s Rx. It’s truly a life safer if you qualify. Also, your pills arrive on time, Being sent before you run out. They say renew when 3 weeks left. I don’t know if you are in America as I don’t know the procedure, if any, for out of America.
Hope this can work for you. I am not allowed to post phone numbers. You will have to look it up.
Judy
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2 ReactionsFirst prescription for Zen Pep - $354/month (20,000, to take 3xday with meals). Then we had to pay more in order to get the second prescription - 10,000 - to take before snacks. Thought this was necessary as I wasn't gaining weight and just too skinny. So $500/month - and maybe have to take forever. But then, as I kept asking for some help or other option, I heard from the hospital mail order delivery (I live in CO, and am seen by UC Health), and it was about 50% less to get it this way. Definite helps! Maybe check if you have any mail order options.