1. < Pancreatic Cancer

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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anindita | @anindita | Aug 16, 2024
In reply to @stageivsurvivor "Lynparza (Olaparib) is not chemotherapy. Chemotherapy drugs work by interrupting the DNA cell cycle. Olaparib is..." + (show)
@stageivsurvivor

Lynparza (Olaparib) is not chemotherapy. Chemotherapy drugs work by interrupting the DNA cell cycle. Olaparib is a PARP-1 inhibitor used as maintenance monotherapy by inhibiting the enzyme PARP which is necessary for catalyzing the repair of broken stands of DNA. When there is inhibition of DNA strand repair, the cell undergoes apoptosis and dies.

I take the biosimilar PARP inhibitor Rubraca (Rucaparib) over 8.5 years now as the longest pancrecancer patient in the world on it. At exactly six years is when I began to feel fatigued. A characteristic of all PARP inhibitors is the suppressions of bone marrow precursor cells that become RBC’s when they mature and reach the circulation. A pause of 4 weeks and then restarting at the first dose reduction has made it more tolerable and my RBC and Hgb levels, while still in the range for anemia, are sufficient to reduce the fatigue. I try to be diligent at exercising daily by walking several miles. For inclement weather, I invested in a stationary exercise bike. The one dose reduction and keeping up with moderate exercise has helped with stamina and endurance. I still have leeway in doing another dose reduction should the anemia and it’s symptoms increase.

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How much drug dosage of olaparib did you take in a day?

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pancreaticcsurvivor | @pancreaticcsurvivor | Apr 10, 2024
In reply to @patti1952 "I don't understand the whipple procedure, can anyone please explain in non medical terms" + (show)
@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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jeeplewis | @jeeplewis | Apr 10, 2024

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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choosejoy | @choosejoy | Apr 10, 2024
In reply to @jeeplewis "You might also try other FDA approved pancreatic enzymes. There are about six. I switched from..." + (show)
@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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jeeplewis | @jeeplewis | Apr 10, 2024
In reply to @choosejoy "She should check out AbbVie for a discount card. I just filled my first prescription and..." + (show)
@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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1 reply
choosejoy | @choosejoy | Apr 9, 2024
In reply to @kathyj59270 "My sister tried getting Creon from our small town pharmacy and they want $1500!!! stupid crazy!..." + (show)
@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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1 reply
kathyj59270 | @kathyj59270 | Mar 11, 2024
In reply to @altc321 "AMAZING price difference between CVS mail order and CVS retail price for Creon pancreatic enzyme supplement..." + (show)
@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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1 reply
msliz55 | @msliz55 | Jan 1, 2024

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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nancyjane1 | @nancyjane1 | Dec 31, 2023

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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jeeplewis | @jeeplewis | Dec 26, 2023

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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