What are other survivors doing about pancreatic enzymes replacement?

Posted by marvinjsturing @marvinjsturing, Jul 13, 2018

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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@patti1952

I don't understand the whipple procedure, can anyone please explain in non medical terms

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whipplepathway.ca
Have a look at this. This is what my surgeon provided me so I would understand what I was about to undergo...and in simple terms.

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I did not notice any difference. The dosages per capsule are different. I just took the closest dose equivalent. FYI: I have recently been experimenting with decreasing my dosage to see if it has any effect on my weight or the amount of undigested food in my stools. I am 7 months post-surgery and my weight is stable where it was pre-diagnosis and there's very little or no undigested food in my stools. I figure my pancreas has recovered as much as it is going to so, I'm testing it's ability to produce enzymes without supplements.

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@jeeplewis

You might also try other FDA approved pancreatic enzymes. There are about six. I switched from Creon to Zenpep because Creon was difficult to get. Like Creon, Zenpep has a financial assistance program, and I am getting a years supply for free. The eligibility criteria were liberal and the application process easy.

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Curious if you noticed any difference between Creon and Zenpep?

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@choosejoy

She should check out AbbVie for a discount card. I just filled my first prescription and only had to pay $5.

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You might also try other FDA approved pancreatic enzymes. There are about six. I switched from Creon to Zenpep because Creon was difficult to get. Like Creon, Zenpep has a financial assistance program, and I am getting a years supply for free. The eligibility criteria were liberal and the application process easy.

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@kathyj59270

My sister tried getting Creon from our small town pharmacy and they want $1500!!! stupid crazy! i’m telling her about CVS!

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She should check out AbbVie for a discount card. I just filled my first prescription and only had to pay $5.

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@altc321

AMAZING price difference between CVS mail order and CVS retail price for Creon pancreatic enzyme supplement (3mo supply… $90 vs $593.20). We initially paid $190 for 1 month supply but found out from the Mayo nurse yesterday when asked for refill, she ordered it from the Mayo pharmacy, which uses CVS mail order. THIS IS RIDICULOUS!!!
You should checkout CVS CAREMARK…. it’s free to join (Caremark.com) .

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My sister tried getting Creon from our small town pharmacy and they want $1500!!! stupid crazy! i’m telling her about CVS!

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My husband qualified for the Creon assistance program from Abbvie. I didn't think we'd qualify until I saw someone else post about it on here. I think a couple could have up to $102,000 in income in order to qualify. You don't have to send in proof of income; just give them permission to access your income tax records. You fill out a one-page form and you get your oncologist to fill out another page. We get a year's supply free, and after that I understand it's not difficult to renew.

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I have been on Creon since Aug.2011. Prices should get better this year with changes to Federal law. Also local help can come from your local hospital. Ours is called the Angel Fund. Ask ! I am fortunate to be on Medicare and a good supplement. I take 3 Creon 36,000 and 2 Creon 24,000 daily.

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As for the expense of pancreatic enzymes…..I have used Creon and am now using Zenpep. There are about 5 FDA approved pancreatic enzyme concoctions. Though I am not low-income, I qualified for financial assistance through my clinic for Zenpep (distributed in the U.S. by Nestlé) and have a year’s supply for free—it is delivered to my clinic whenever I request a refill. I understand that Creon has a financial assistance program as well. That might be an avenue to explore with your clinic.

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@katiegrace

gardenlady,
Do you have an out of pocket max for your drugs, for medicare?
I will be on medicare in another year. I'm just wondering how much per year I will then have to pay for Zenpep. I take Zenpep instead of Creon.
Zenpep is also very expensive.

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Medicare prescription drug plans vary, depending on if they are Medicare Disadvantage Plans or traditional Medicare. it is important to learn some of the ins and outs. Traditional Medicare prescription drug plans (Medicare part D) have a basic allowance, "donut hole" and then catastrophic range. This changes and you will need to update information each year. You might be required to use a mail order plan for full benefits so you need to take a look at the requirements. Medical benefits are Medicare Part A and B, A is hospital and B is outpatient services. Medicare B pays 80%. Typically people purchase supplemental insurances, vary in what is covered with the varying levels. Medicare Disadvantage plans (Known officially as Medicare part C, MedicareAdvantage) I am glad I went to traditional Medicare because MSKCC doesn't participate in Medicare Disadvantage plans. Networks vary. Treatment at a major cancer center might be covered. For example, a plan in this area might cover Columbia Presbyterian, Weill-Cornell, or NYU. My sister has a Medicare Disadvantage Plan. She, like myself, has the BRCA gene. She has an unusual form of esophageal cancer. Her Medicare Disadvantage plan covered University of Michigan. I would not recommend it for pancreatic cancer. In any case, her plan covered Cleveland Clinic but not Mayo Clinic. Cleveland and Michigan agreed on the plan so it didn't seem like it was necessary for her to pay for an out of network consultation for 3rd opinion. Since her first line chemo did not stop the cancer from spreading to the liver, she is getting a second line therapy. She will be reevaluated in a few weeks to evaluate her response. She has been advised at Michigan that there isn't an alternative if the current doesn't work. She will also follow up with Cleveland Clinic to review the findings. When I see how my sister has been treated, I am most grateful for my traditional Medicare plan. I am most grateful that MSKCC is relatively accessible to me and covered by my plan. It is more expensive than Medicare Disadvantage however, I think my life is worth it.

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