Pancreatic Cancer Support Group

Pancreatic Cancer Support Group

Tue, Jan 24, 2023
12:00pm to 1:30pm MT

Description

A cancer diagnosis may be stressful and scary.  Talking to someone in a similar situation may be helpful.

Please join us the fourth Tuesday of each month from 12:00 noon to 1:30 p.m.

Location

Zoom online meeting

Location

Online

Contact

Raeane Veralrud, MSW
Raeane Veralrud, MSW
Email: veralrud.raeane@mayo.edu
Phone: 480-342-0005
@stageivsurvivor

Using pancrealipase like Creon requires the patient to optimize the initial prescribed dose which is calculated on one’s body weight. It assumes one is following dietary guidelines for how one should eat following a Whipple which is no-fat, low-fat, small portions more frequently during the course of the day. As part of my dose being determined, I took the time to describe to my prescriber my eating habits and diet. So when Creon was prescribed, I had a little tweaking to do when I ate something I normally don’t eat or consumed a larger portion.

To make the process easier, I started out following the suggestion of small meals that were low-fat and non-fat. I kept a daily food journal noting date/time, type of meal, contents, quantity and amount of fat. It takes between 24-40 hours from ingesting food to be digested and excreted. So I then noted GI tract symptoms and stool characteristics. If it caused cramps, loose stool, floating stool or diarrhea, I looked back 24-40 hours to see what I injested. If Imate the same meal and same results, it was likely what the cause was and I noted and eliminated the offending item.

Vegetables are difficult to digest even with a normally functioning GI tract. Some vegetables have complex wall. Cabbage, Brussels sprouts and corn are very hard to break down and they cause excessive gas that can lead to painful cramps. The enzyme needed to break down vegetables is alpha-galctosidase and humans do not produce it nor is it contained in pancrealipase. Amylase will break down the simpler carbohydrates in plants but it requires alpha-galactosidase for complete digestion. The OTC product BEANO contains alpha-galactosidase and when taken as directed, will reduce gas and allow nutrients and vitamins in the vegetables to be absorbed. Early in my optimizing of food, I avoided the more difficult vegetables. Refer to the following link-

https://flatulencecures.com/vegetables-that-cause-gas/

I slowly introduced new items or increased the quantity and again observed the effect. Within a few weeks I had a working diet that was symptom free. When additional Creon was required, it needs to be taken staggered. Do not take them all at once. The objective is to have a consistent level of enzyme available to work on its target substrate (food containing carbohydrates, fats and proteins). Take the first capsule either immediate before the first bite of food or immediately after the first bite of food…does not matter as long as it is not taken well before eating the meal. Enzymes have a limited period of effectiveness and get activated when the capsule reaches the alkaline environment of the small intestine and the coatings on the enzymes dissolve. Enzymes last about 45 minutes so taking it before the real is using them up sooner and less are available to aid the digestive process.

The only thing common to all the Rx pancrealipase brands is they are derived from porcine pancreas. They way they are extracted from the pancreas, processed, purified, concentrated, coated and the binders and fillers used vary. These differences account for how the different brands perform in the same individual as well as how the same brand performs amongst a group of patients. If after optimizing (increasing/adjusting the quantity of capsules based on specific meals) the desired performance is not achieved, speak with the dietitian about evaluating another brand.This usually remedies the issue of performance.

If one continues to suffer from loose stool or diarrhea, there can be another con-morbidity occurring at the same time. Common ones are lactose intolerance and gluten sensitivity (celiac disease. These are east to determine by eliminating daily and gluten products and then introducing one back first and noting the effect. If ok, then just do gluten products and observe the result. It is not uncommon for a patient to exhibit one of these condition after the Whipple procedure.

Other pathologies will require a diagnostics work-up by a GI specialist. Pathologies that can cause GI issues that pancrealipase will not ameliorate are Crohn’s disease, ulcerative colitis, IBD/IBS, Small Intestine Bacterial Overgrowth (SIBO) and a Clostridium difficile (C. diff) infection. A GI specialist can check for these to rule out.

Pancreatic Enzymes
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/

DIET AND NUTRITION
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

HOW TO EAT AFTER WHIPPLE SURGERY

https://liverandpancreassurgeon.com/diet-after-whipple-procedure-surgery/

CELIAC DISEASE

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

LACTOSE INTOLERANCE

https://www.mayoclinic.org/diseases-conditions/lactose-intolerance/symptoms-causes/syc-20374232

Jump to this post

Thank you very much for the information, I am going to start a food diary today. I am so confused, I am also seeing a functional medicine doctor and he has recommended many things. Feels I have bacteria in my stomach. My medical doctors don’t respect the functional healing, but I am on the fence. They gave me an enzyme pan x and it made my C-19 go up high. So oncologist said I cannot take but felt great on it. I have an appointment with another GI that Pan Can suggested at the Cleveland clinic that specializes in pancreatic cancer. Will be interesting. I just had a pet scan and came out no tumors, but still not feeling good. Hoping the GI dr will have an idea. Has anyone on the board treated with herbs etc? I am 23 months and Very grateful. But, very confused. Thank you

REPLY
@stageivsurvivor

Using pancrealipase like Creon requires the patient to optimize the initial prescribed dose which is calculated on one’s body weight. It assumes one is following dietary guidelines for how one should eat following a Whipple which is no-fat, low-fat, small portions more frequently during the course of the day. As part of my dose being determined, I took the time to describe to my prescriber my eating habits and diet. So when Creon was prescribed, I had a little tweaking to do when I ate something I normally don’t eat or consumed a larger portion.

To make the process easier, I started out following the suggestion of small meals that were low-fat and non-fat. I kept a daily food journal noting date/time, type of meal, contents, quantity and amount of fat. It takes between 24-40 hours from ingesting food to be digested and excreted. So I then noted GI tract symptoms and stool characteristics. If it caused cramps, loose stool, floating stool or diarrhea, I looked back 24-40 hours to see what I injested. If Imate the same meal and same results, it was likely what the cause was and I noted and eliminated the offending item.

Vegetables are difficult to digest even with a normally functioning GI tract. Some vegetables have complex wall. Cabbage, Brussels sprouts and corn are very hard to break down and they cause excessive gas that can lead to painful cramps. The enzyme needed to break down vegetables is alpha-galctosidase and humans do not produce it nor is it contained in pancrealipase. Amylase will break down the simpler carbohydrates in plants but it requires alpha-galactosidase for complete digestion. The OTC product BEANO contains alpha-galactosidase and when taken as directed, will reduce gas and allow nutrients and vitamins in the vegetables to be absorbed. Early in my optimizing of food, I avoided the more difficult vegetables. Refer to the following link-

https://flatulencecures.com/vegetables-that-cause-gas/

I slowly introduced new items or increased the quantity and again observed the effect. Within a few weeks I had a working diet that was symptom free. When additional Creon was required, it needs to be taken staggered. Do not take them all at once. The objective is to have a consistent level of enzyme available to work on its target substrate (food containing carbohydrates, fats and proteins). Take the first capsule either immediate before the first bite of food or immediately after the first bite of food…does not matter as long as it is not taken well before eating the meal. Enzymes have a limited period of effectiveness and get activated when the capsule reaches the alkaline environment of the small intestine and the coatings on the enzymes dissolve. Enzymes last about 45 minutes so taking it before the real is using them up sooner and less are available to aid the digestive process.

The only thing common to all the Rx pancrealipase brands is they are derived from porcine pancreas. They way they are extracted from the pancreas, processed, purified, concentrated, coated and the binders and fillers used vary. These differences account for how the different brands perform in the same individual as well as how the same brand performs amongst a group of patients. If after optimizing (increasing/adjusting the quantity of capsules based on specific meals) the desired performance is not achieved, speak with the dietitian about evaluating another brand.This usually remedies the issue of performance.

If one continues to suffer from loose stool or diarrhea, there can be another con-morbidity occurring at the same time. Common ones are lactose intolerance and gluten sensitivity (celiac disease. These are east to determine by eliminating daily and gluten products and then introducing one back first and noting the effect. If ok, then just do gluten products and observe the result. It is not uncommon for a patient to exhibit one of these condition after the Whipple procedure.

Other pathologies will require a diagnostics work-up by a GI specialist. Pathologies that can cause GI issues that pancrealipase will not ameliorate are Crohn’s disease, ulcerative colitis, IBD/IBS, Small Intestine Bacterial Overgrowth (SIBO) and a Clostridium difficile (C. diff) infection. A GI specialist can check for these to rule out.

Pancreatic Enzymes
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/

DIET AND NUTRITION
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

HOW TO EAT AFTER WHIPPLE SURGERY

https://liverandpancreassurgeon.com/diet-after-whipple-procedure-surgery/

CELIAC DISEASE

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

LACTOSE INTOLERANCE

https://www.mayoclinic.org/diseases-conditions/lactose-intolerance/symptoms-causes/syc-20374232

Jump to this post

Thanks for sharing this David! You are my Hero!!

REPLY

I was diagnosed with stage 3 pancreatic cancer in Jan 2021. Cancer had spread to multiple lymph nodes. I was able to have Whipple surgery with msv reconstruction in Feb 2021 , followed by 12 folfirinox chemo treatments from April to sept 2021. Things have been going well, made it to the 2 year mark. Tumour marker has been climbing, and now liver enzymes are also climbing. This is a change. So far, health has been stable. Just had a CT scan today, waiting for results. I suspect metastasis to liver. What can i expect? Treatment options? Thank you.

REPLY
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