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What are other survivors doing about pancreatic enzymes replacement?
Pancreatic Cancer | Last Active: Aug 16 8:07pm | Replies (111)Comment receiving replies
My husband has been taking creon since last June. We always assumed the diarrhea was due to chemo, but maybe not since it has continued off and on since chemo ended in December. This is the first time I've heard that maybe this enzyme might be the cause? Does anyone know if the Pure Encapsulation works better? You'd think the docs could suggest trying something different to combat this problem rather than us trying to figure it out on our own. When we paid $1600 in January for John's first Creon prescription of 2020 (insurance deductible had not been met yet), many friends suggested I try mail order from Canada and even Sweden - same creon pills for one tenth the cost! I have not resorted to that yet since our supply is good but am keeping the info handy just in case. John's Whipple procedure last week went well and we won't know for a few weeks yet if he can discontinue using creon. Lots to balance!
Replies to "My husband has been taking creon since last June. We always assumed the diarrhea was due..."
I stumbled across this thread while researching options for obtaining Creon more affordably while my dad is in the Medicare donut hole. Dad also had the Whipple surgery 2 years ago for stage 2b pancreatic cancer. Creon helps the diarrhea but does not eliminate it. Very gradually over a year or so, he was able to get back to a more desirable weight and is back to his active lifestyle despite needing to stay close to a bathroom due to diarrhea one to two times a day. The Ensure and other protein drinks recommended to increase his protein intake made the diarrhea worse and upset his stomach so he stopped that …probably developed a bit of lactose intolerance. Dad recently tried cutting back on the Creon due to the cost, but his GI symptoms became intolerable. His doctor is working with him to try to get some financial help from Abbvee. Don’t know when or if we will hear back from them. This is a huge issue for so many people and I wish I knew of a way to work toward a solution for everyone who needs this medication!
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I wish your husband a good recuperation. If your situation is similar to ours, seek nutritional guidance outside of the oncology or hospital. We hired our own dietician because we've been waiting 2 months for the hospital's oncology nutritionist. I had no idea that the Creon was so expensive. Ever since her diagnosis we've met the out of pocket maximums both years.