What are other survivors doing about pancreatic enzymes replacement?

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.

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.

I have Medicare and my medications are very expensive. After I go thru the basic $4800 then I go into the donut hole". I pay 20% 50 the cost, the manufacturer pays half of that. My 3 month supply of Creon, 36,000 three four times a day has a cost of $14,000. This year I made it into the "catastrophic range" and paid a 5% copay. The olaparib (Lynparza) is $15,000 monthly so the monthly copay was $800. Fortunately, I just started in September2023. In 2024 the 5% co-pay will go away so I will just have to make it thru the donut hole. Both medications have manufacturer programs for free medication by I do not qualify for either manufacturer programs. Some insurers may require use of a mail order pharmacy to cover the cost. Insurance companies vary widely in their coverages so it is important to know your own insurance benefits.

I would love to hear more about pure encapsulations could make a difference anyone try it?

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) .

I have just started on pancreatic enzymes and do not know what I am doing . It is Creon and my abdomen gets more tight as the day goes on . Am I not taking enough enzymes . Not even sure I need them . My only symptom is gas and abdominal pain and swelling . No diarrhea or floating fatty stools . I have pancreatic cancer.

Aceman66, I had my whipple on july12 and it has been a miserable time. Everyone has been telling me I’m doing great but couldn’t eat couldn’t sleep and pain was miserable. For the past week I have been taking 2 36000 creon tabs with each meal. Eating 1 gas x tab after each meal, and taking a dose of miralax every morning. This has been a life saver, the only issue over the passed week has been the top of my scar pain. Get your diet under control and you will be good

I also have the same stomach problem. When it is serene I drink broth to rest the pancreas and don’t take any enzymes with it. I truly haven’t felt good for 3 years. Losing weight, afraid to eat because of stomachache and side pain. I don’t feel well on Ceron but have to take it. Good luck I had chemo before the Whipple and helped shrink my tumors.

I really do not notice that my stools are oily and they do not float but I am always in pain and have tightness at top of my incision . This is constant . I wanted my doctor to do a cat scan but he said I didn’t need one . The tramodol does not help the pain so there is no relief . Does anybody else have this issue ? Not gaining any weight but maintaining now after losing 10 lbs . Fixing to start chemo and don’t feel I can tolerate it.

I found Creon did not increase my chronic constipation. Even though I had gas and oily stools, I still needed to take Miralax. Over 6 months, the dose of Creon was increased until I finally got to a dose that controlled it, 36,000 units two with a meal. I was starting to regain weight before the Whipple's. I was down 7 lb after surgery. I struggled with gas, abdominal discomfort and increased constipation after surgery. I am now 6 weeks out from my Whipple's. It has been difficult. To eat six times a day, I need to eat about every 3 hours. I am not hungry but I am able to eat. If I wait until I am hungry, I am not able to eat enough at a meal to get my calories in. I have been working with the hepatobiliary dietician at MSKCC and nut butters were suggested as a way to increase calories. I have tried almond and cashew butter since I was really tired of peanut butter. I have started gaining some weight. It has been a difficult six weeks. Just in the past few days I have felt more like myself fand begining to feel more hopeful about getting back to my usual state of energy