Weight Loss after Whipple: What strategies helped you?

Posted by gchezick @gchezick, Mar 28, 2022

I have been discharged from the hospital for about 5 days, have so far lost about 30 pounds. including 4 at home. What strategy has been successful for you to minimize weight and muscle loss? Thank you.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Hi gchezick!
So glad you reached out to our Whipple community for answers. I too experienced 30+ pounds of weight loss post surgery. Your body has gone through a tremendous traumatic surgery and it will take time to heal and eat enough to maintain a steady weight. I remember thinking that everything, including water tasted awful! You have to do what works for you. Small amounts of food is the key. Even if it doesn’t taste good try and make yours eat a few bites! Protein is important and any protein shake can help. Again, drinking one protein drink throughout the day will give you 30 grams!
Add foods like mashed potatoes, yogurt, scrambled eggs are also easy to digest! I know you are thinking this is never going to get better but it does! Be patient with your body and healing will come! Also, there is a product called Enterade, in the orange flavor, is a product Oncologist recommended for patients struggling with eating. I hope this provided a little encouragement. Please feel free to reach out!

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@gchezick, I wanted to check in with you. Did you see @elm60's helpful post. Like you, she lost 30 pounds post surgery and has some tips for you.

How are you doing today? Have you started to find foods to help regain weight? Have you considered talking with an oncology dietitian?

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My Dad had the Whipple for his NET in October2021. He was doing well, although weight loss of course, then he started getting sick again. In March, he was very very sick, bilirubin backing up and he had a biliary drain put in at MD Anderson. That saved his life. He continues to have drain changes and hopefully will have them out. Putting on weight is a slow struggle also. He eats all he can. It seems this is definitely a slow process. What meds are you on, permanently? Creon? Protonix? Thank you!

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@mydadhadnetpancreatictumorandwhipple

My Dad had the Whipple for his NET in October2021. He was doing well, although weight loss of course, then he started getting sick again. In March, he was very very sick, bilirubin backing up and he had a biliary drain put in at MD Anderson. That saved his life. He continues to have drain changes and hopefully will have them out. Putting on weight is a slow struggle also. He eats all he can. It seems this is definitely a slow process. What meds are you on, permanently? Creon? Protonix? Thank you!

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Hello @mydadhadnetpancreatictumorandwhipple and welcome to Mayo Clinic Connect. I am sorry to hear of the problems that your dad has had post-surgery. I have had three surgeries of the upper digestive tract and it is often difficult to get the right amount of nutrition and calories to help you feel at your best.

If you read the post by @elm60, she gives a lot of information about what to eat/drink in order to keep up your weight and feel better. She specifically mentioned small meals and liquid protein drinks like Enterade. Has your dad tried this product?

While I've never used Enterade, a number of people in a NETs support group that I attend have used it and speak highly of its effectiveness. As I recall you have to purchase it online, it is not available in drug stores or other markets.

You mentioned that your dad has a biliary drain. Was this needed because of scar tissue?

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Hi Teresa, I did read the post by @elm60 and I had not heard of Enterade. I will look into it! He is slowly getting back to normal and does not enjoy the Boost drinks or other supplemental drinks, but maybe this will be a little different. Yes, due to scar tissue. He had an 8.5 french drain put in, then a 10 (for 5 days that was likely not done properly), then a 12. With the 12 he has been doing well. Still flusheds it twice a day. Still on Creon and Protonix but I'm wondering if those are temporary or lifelong medications.
I hope you are recovering and getting enough nutrition, 3 surgeries is alot. Hang in there!

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Has anyone figured out how to gain weight consistently after their Whipple surgery? I lost nearly 50lbs after the surgery and am struggling mightily in regaining the weight.

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@montyd

Has anyone figured out how to gain weight consistently after their Whipple surgery? I lost nearly 50lbs after the surgery and am struggling mightily in regaining the weight.

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I don't have a comprehensive answer for that, but sometimes diabetes sneaks up on you along with pancreatic cancer. It's worth getting checked for if you don't already know your status. It takes a fine balance of enzymes and insulin for your body to get proper nutrition out of the foods you eat. I lost about 15 pounds (from 175 to 160) after Whipple, but that's where I wanted to be anyway.

While on Folfirinox, I regained the 30 pounds I had lost prior to diagnosis, so I had pounds to spare at that point. Since losing the 15 pounds post-Whipple, I've been stable as a rock at 160. I'm eating a LOT of calories every day, which would probably be fattening me up a good bit more if I had a full, functioning pancreas.

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@markymarkfl

I don't have a comprehensive answer for that, but sometimes diabetes sneaks up on you along with pancreatic cancer. It's worth getting checked for if you don't already know your status. It takes a fine balance of enzymes and insulin for your body to get proper nutrition out of the foods you eat. I lost about 15 pounds (from 175 to 160) after Whipple, but that's where I wanted to be anyway.

While on Folfirinox, I regained the 30 pounds I had lost prior to diagnosis, so I had pounds to spare at that point. Since losing the 15 pounds post-Whipple, I've been stable as a rock at 160. I'm eating a LOT of calories every day, which would probably be fattening me up a good bit more if I had a full, functioning pancreas.

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Thanks. PC has made me diabetic type 2. I will have to learn how to balance the proper insulin and Creon enzymes to feed my body the proper nutrients.

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@montyd

Has anyone figured out how to gain weight consistently after their Whipple surgery? I lost nearly 50lbs after the surgery and am struggling mightily in regaining the weight.

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It took almost two years to stabilize my weight. I eat a lot, focus on protein, and (think) I have my creon and insulin dosing figured out. I gained weight very slowly, but I did it. A dietician can help advise you.
Good luck, best wishes!

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@montyd

Has anyone figured out how to gain weight consistently after their Whipple surgery? I lost nearly 50lbs after the surgery and am struggling mightily in regaining the weight.

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The Whipple procedure involves the resection of the head of the pancreas. This section is where up to 82% of the acinar cells are found whose function is to produce and secrete the digestive enzymes amylase, lipase and protease. These enzymes are essential to digest carbohydrates, fats and proteins respectively so that nutrients and vitamins are absorbed through the small intestine. When there is insufficient enzymes available, the condition of Exocrine Pancreas Insufficiency (EPI) results. It is ameliorated using Pancreatic Enzymes Replacement Therapy (PERT). This is accomplished with Rx pancrealipase-a generic name of a blend of the three digestive enzymes taken at the start of the meal and if additional capsules are required, taken staggered throughout the course of the meal to ensure sufficient levels of enzymes are present for thorough digestion.

Some patients don’t require PERT but almost 50% do to some degree either short or long term. There are some overt symptoms that warrant going on PERT. When just weight loss is the symptom, the fecal elastase is used to make a diagnosis.

I had suffered significant weight loss after the Whipple procedure resulting from EPI. My surgeons never prescribed PERT, telling me instead to eat smaller meals less frequently. That did not work even with increasing caloric intake. I had to advocate in requesting a pancrealipase be prescribed. The effects were immediate…it stopped GI discomfort and I gained 10 lbs in 16 days. I optimized the dosage based on the type of meals and fat content and my weight and BMI has returned to what is considered a healthy weight for my height.

The most knowledgeable team member to address EPI is a registered dietitian. Look for one with the designation C.S.O. (Certification Specialist Oncology). They are connected with GI Cancer, Hepatobiliary and Pancreas programs at large comprehensive cancer centers. They have advanced training and extensive knowledge in the dietary and nutritional needs of Whipple patients. My quality of live, stamina and strength significantly improved once I began PERT.

Some links on PERT-

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


http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf
https://digestthis.ca

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