What are other survivors doing about pancreatic enzymes replacement?

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.

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.

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.

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

@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

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.

Question:
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.