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.

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@anindita

61 yr old patient, liver mets after 7 months of whipples. Now under chemo. Not able to gain weight which leads to low confidence and weakness. He is taking Creon. Still no gain in weight. How to prevent it from decreasing further? What lifestyle should he follow? What food should he eat to gain weight?

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@anindita, I moved your questions about how to gain weight after treatment for pancreatic cancer to this related discussion:
- Weight Loss after Whipple: What strategies helped you?
https://connect.mayoclinic.org/discussion/weight-loss-after-whipple-performed-on-2242022/
Click the link to see tips members have shared.

How is your dad doing?

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@colleenyoung

@anindita, I moved your questions about how to gain weight after treatment for pancreatic cancer to this related discussion:
- Weight Loss after Whipple: What strategies helped you?
https://connect.mayoclinic.org/discussion/weight-loss-after-whipple-performed-on-2242022/
Click the link to see tips members have shared.

How is your dad doing?

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I’m not trying to be snide, but I’m now actually looking for weight loss after distal surgery. I was 125 last year after my surgery/chemo and yesterday I just weighed in at 155 and I keep putting on 2 pounds every time I weigh in at the infusion center! I’m going not 5’4”. Any ideas how to lose about 10-15 pounds? I don’t eat much, really, but my GAC chemo doesn’t have the long lasting nausea effects that my fulfirnix had so my appetite is too good though I eat small amounts a few times per day ( I am tuoe 1 diabetic now with severe lows and severe highs and if I go too long without eating my blood sugar starts plummeting real fast to 60’s and below if I or my son who watches over me like a hawk doesn’t catch it when I’m sleeping). I have to eat candy in order to stop that plummeting. Any suggestions?

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@colleenyoung

@anindita, I moved your questions about how to gain weight after treatment for pancreatic cancer to this related discussion:
- Weight Loss after Whipple: What strategies helped you?
https://connect.mayoclinic.org/discussion/weight-loss-after-whipple-performed-on-2242022/
Click the link to see tips members have shared.

How is your dad doing?

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Thank you so much @colleenyoung !! This thing that you are doing... Helping people all over the world.. is wonderful 🙂
Hope you are doing well!!

My dad has started his 2nd cycle of Gem-Abraxane.
The issue is still his weakness and weight loss

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I use Kate Farms shakes. I use the Standard 1.4. They have many different types of nutritional shakes totaling over 400 calories in some of them. Look them up and give them a try. My weight went from 190lbs to 142lbs after my Whipple in June 2023. I currently weigh 175lbs… I’m gradually getting back to my former weight. It takes some time though.

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During this recovery time, protein shakes are your friend. They can get boring, so you have to get creative. Try throwing them in a blender with a banana, or fruit of your choice. It helped me to get them down when I really didn't feel like eating at all. Your body needs the protein to heal. The lack of appetite should be temporary but could last several months. Try taking short walks around your house or out in your yard if you have one. That will help some with keeping your body moving and not getting too weak. Listen to what your body is telling you. Our bodies are wonderfully made and it is silently working very hard to heal even as you sleep. I hope this helps. Hang in there....things will get better!! 🙂

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Husband 4.5 years post pancreatectomy, with excision of the duodenum, pylorus, spleen, gallbladder and also has a cadaver portal vein-His approaches.: Yes daily AM protonix similar medications are essential to alkalinize the stomach to keep the Creon from breaking down there before it gets to the intestine where it is used in absorption. Unfortunately acidity in the stomach is important for absorption of iron and magnesium and indeed other medications. Typical 8-11 oz smoothies created diarrhea for him as he has a 1.5 cup capacity for his stomach with no sphincter to keep it in and they tend to push on through quickly. We went to a 4 oz at a time. Currently Rogain Plant Based Smooth Chocolate seems to agree with him. (He can't process lactose well since surgery. Uses Lactaid to help). So not eating too much at a time is so important to keep food from pushing through too fast. He deals with the iron & magnesium deficits & has had IV Ferritin twice to help with iron. Many of his messenger systems and enzymes due to the extensive surgery impact him. Flax & chia seeds in the diet increase stools for him too. We have used the Bristol Scale to track his stools for absorbency. He can have an obstruction from adhesions so all is a balance. Per his GI surgeon & dietician, he takes a very small dose of psyllium seed in liquid once a day and a daily probiotic. That was a trial and error decision on how seed, too much or too little impacts the stools and one can get constipation or diarrhea either way. We still are looking for significant weight gain. After his first year, GI pancreas MD increased his Creon and that stopped excess stools and increased absorption. The dietician has had us try several different approaches to how he takes the Creon during the meal to increase absorption. Yours might have ideas too. After using solid tablets for vitamins and minerals thinking they may not be breaking down, our dietician discussion led him to using liquid vitamins and/or gummies. We quickly found that anything with the sugar alcohols in it or any product caused diarrhea or multiple stools. So some smoothies & vitamins were discontinued. He figures with all of his anatomy rearrangements that 1 to 2 stools a day should be his normal. More-- we start looking at how and what he is eating. For months without an antibiotic he has just had 1 stool a day. But the weight just doesn't creep up fast at all. The wonderful enzymes our bodies make and release appropriately really are essential. However we are reaching now our 4.5 year mark post surgery and 5 years post diagnosis. These have been special years a gift from amazing advances in health care. Looking forward to learning tips on this site.

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Not sure what your initial weight was like, but my husband's was about 149 before surgery and the 14 hour surgery had utilized a lot of fluid it seemed during it. He was weighing 168 immediately post surgical in the hospital. He joked through his discomfort it was because of the many staples, but he clearly lost a lot of weight after getting home and came rapidly down to his initial weight and then much below. As he noted, he lost a lot of tissue during the surgery from his abdomen and that should account for some of the reasons he will likely never get back to 148 pounds. He has found comfort from a friend's sharing that her grandfather survived a hunting accident that took out his pancreas. From age 35 to 80 he was 6-4 and weighed 119 pounds and worked as a landscaper and Logger. He didn't have cancer, but he survived with a happy life. So we keep hoping!!

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I lost about 30lbs following my whipple. My procedure removed my duodenum, gall bladder and a large portion of my pancreas. Previous comments about protein intake are spit on. Small, frequent meals are also important. It did nit take me too long to regain my weight though. As soon as you can tolerate solid food, then eat non-fatty, non-sinewy, “soft” meats (fish, chicken breast, eggs) in small portions. I also found cottage cheese to be very tolerable. As your GI tract gets back on line consider sous vide for more difficult red meats. I am able to eat flank and skirt steak done in a sous vide without problems (though I still experience dumping syndrome regardless of what I eat even a year later, so got to figure that out…)

I was frustrated by the lack of information and guidance regarding diet following the surgery, but it is a lot of trial and error and unfortunately you will experience discomfort as you try to figure things out.

From my experience fats, wheat, and sugar are the worst foods for me (go figure…).

Lastly, I will put in a pitch for as much activity as you can manage. When you can walk then get out walk. When you can squat, then do squats. When you can do wall push ups the do them, etc… Movement is your friend as your body heals. You might not feel up to it but, movement as you heal will lead to mobility after you are done healing and will help to limit adhesions from developing as a result of the scar tissue.

Good luck and Godspeed to a healthy recovery!!!

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@tbraibish

I lost about 30lbs following my whipple. My procedure removed my duodenum, gall bladder and a large portion of my pancreas. Previous comments about protein intake are spit on. Small, frequent meals are also important. It did nit take me too long to regain my weight though. As soon as you can tolerate solid food, then eat non-fatty, non-sinewy, “soft” meats (fish, chicken breast, eggs) in small portions. I also found cottage cheese to be very tolerable. As your GI tract gets back on line consider sous vide for more difficult red meats. I am able to eat flank and skirt steak done in a sous vide without problems (though I still experience dumping syndrome regardless of what I eat even a year later, so got to figure that out…)

I was frustrated by the lack of information and guidance regarding diet following the surgery, but it is a lot of trial and error and unfortunately you will experience discomfort as you try to figure things out.

From my experience fats, wheat, and sugar are the worst foods for me (go figure…).

Lastly, I will put in a pitch for as much activity as you can manage. When you can walk then get out walk. When you can squat, then do squats. When you can do wall push ups the do them, etc… Movement is your friend as your body heals. You might not feel up to it but, movement as you heal will lead to mobility after you are done healing and will help to limit adhesions from developing as a result of the scar tissue.

Good luck and Godspeed to a healthy recovery!!!

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Hello @tbraibish and welcome to the NETs support group on Mayo Connect. You have certainly offered some great suggestions for developing an eating plan after a Whipple. As you mentioned, sometimes there isn't much information or guidance regarding diet following an extensive surgery. Unfortunately, it becomes a trial-and-error process, and it often results after a bad digestive upset.

I generally suggest to anyone who is anticipating GI surgery to request to see a registered hospital dietician prior to being discharged. From what I understand, Mayo Clinic does this for their patients, but the rest of us need to request this service.

I look forward to getting to know you. As this is your first post, would you share a bit about your NETs diagnosis and treatment. How long ago were you diagnosed? Is surgery the only treatment that you have had? Are you having regular follow-ups?

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