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?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Profile picture for Colleen Young, Connect Director @colleenyoung

@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

Jump to this post

Thank you, I will reach out to them Monday.

REPLY

Thank you. I hope those who take Zenpep are able to use it.

Judy

REPLY
Profile picture for ellrose45 @ellrose45

I 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

Jump to this post

@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

REPLY
Profile picture for katieliz @katieliz

First 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.

Jump to this post

I 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

REPLY
Profile picture for tracyweis @tracyweis

I had a Whipple at Mayo Clinic nearly 12 years ago and have been on a number of different pancreatic enzymes over the years. I currently taking Creon, but it’s so incredibly expensive. I’d love to hear more about the Pure Encapsulation.

Jump to this post

First 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.

REPLY
Profile picture for stageivsurvivor @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.

Jump to this post

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

REPLY
Profile picture for patti1952 @patti1952

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

Jump to this post

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.

REPLY

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.

REPLY
Profile picture for jeeplewis @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.

Jump to this post

Curious if you noticed any difference between Creon and Zenpep?

REPLY
Profile picture for choosejoy @choosejoy

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

Jump to this post

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.

REPLY
Please sign in or register to post a reply.