Extreme loss of appetite since starting chemo for pancreatic cancer

Posted by kjc12 @kjc12, May 24, 2023

My husband had Whipple surgery Feb 2, 2023 for a Stage 1B pancreatic tumor. He is receiving the Folfirinox chemo regimen. The 1st round was horrible. They decreased certain amounts for the 2nd and 3rd treatments. Since starting Chemo he has lost 17lbs not including the 10lbs he lost after the Whipple surgery. The Chemo has taken away any desire to eat. We have been given various medications to stimulate appetite and none are really working. He is scheduled for his 4th round June 1st. Has anyone dealt with this same struggle? He can’t keep losing and would appreciate any feedback on this.

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Folfirinox is a very agressive chemo. I couldn't stand it (lost 20lbs in 3 weeks... and they changed it to Gemcitabine.
Was he prescribed some Creon ? It helped me a lot to stop loosing weight. You should talk to his oncologist.
All the best!

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@pat125

Folfirinox is a very agressive chemo. I couldn't stand it (lost 20lbs in 3 weeks... and they changed it to Gemcitabine.
Was he prescribed some Creon ? It helped me a lot to stop loosing weight. You should talk to his oncologist.
All the best!

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Thanks, I hope things are going better for you. He is on Zenpep enzymes 40,000u 3 w/meals 1 w/snacks right now. Increase has helped with other issues, but not the weight yet.

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I try my best to just chug boost very high protein even though I do have similar taste issues with same chemo regimen..still do loose weight but maybe slow down some. Good luck to him, myself and others and may god give us strength

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@patel

I try my best to just chug boost very high protein even though I do have similar taste issues with same chemo regimen..still do loose weight but maybe slow down some. Good luck to him, myself and others and may god give us strength

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Thank you. May I ask what stage in Chemo you’re at? He is scheduled for 12 rounds over 6 months. Has the “desire” to eat returned for you?

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@kjc12

Thank you. May I ask what stage in Chemo you’re at? He is scheduled for 12 rounds over 6 months. Has the “desire” to eat returned for you?

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For me the desire to eat got better with Creon treatment. I am now up to 72,000 and my intestinal symptoms are better and my appetite seems to be better. I am trying to take in some high protein drinks. Fairlife seems to taste the best to me. Doesn't seem to be too filling so I still feel like eating at a meal time. Appetite didn't change with the chemo, I have had 11 rounds. I am scheduled for surgery June 21st after going from borderline operable to operable. I am concerned because of my nutritional state. I went from 145 lb to 108. Finally stabilizing after the increases in Creon.

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I had lost 30 pounds (diet + exercise + cancer) prior to my Stage-2 PDAC diagnosis, and managed to regain it all while on Folfirinox for 6 months. Lots of meat/protein/fat in my diet. Heavy whipping cream in my coffee accounted for about 800 calories per day.

After 6 months of chemo, I had the Whipple, and lost about 15 pounds in the following 4-6 weeks, but have been stable ever since. I had to start Creon and cut back on the fats, but even after 4 months on a new chemo since my recurrence, my weight is still stable. Still eating lots of protein.

If your husband is not eating enough, then he needs the most calorie-dense nutrients he can get. Smoothies and shakes might fit the bill. Patients also absorb less nutrients after a Whipple, so there might be some other vitamin/mineral supplementation required beyond just enzymes. I was getting vitamin B12 injections for a while to fight fatigue (and low B12), which gave me enough energy to want to eat.

For appetite, my dad has been taking megestrol during his treatment, and eating like a horse. You might be able to get a prescription for medical marijuana to stimulate appetite, but your access and mileage may vary. I've found the non-psychoactive CBD gummies and oils helpful in calming my digestive tract. I can't say they stimulate appetite, but are a little bit calming and relaxation-inducing and nausea-reducing, which makes eating just a little more pleasant.

The psychological aspects of past nausea can also induce fear of eating in the future. Reflux was an issue for me while on Folfirinox, so I had to make sure I didn't lie down in bed too soon after a meal. I would often nap sitting up in a recliner after meals, and avoid drinking too much fluid with meals to prevent food from sloshing around, and focus on thicker foods that "stayed down" easily.

Wishing you both the best!

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@gardenlady1116

For me the desire to eat got better with Creon treatment. I am now up to 72,000 and my intestinal symptoms are better and my appetite seems to be better. I am trying to take in some high protein drinks. Fairlife seems to taste the best to me. Doesn't seem to be too filling so I still feel like eating at a meal time. Appetite didn't change with the chemo, I have had 11 rounds. I am scheduled for surgery June 21st after going from borderline operable to operable. I am concerned because of my nutritional state. I went from 145 lb to 108. Finally stabilizing after the increases in Creon.

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Thank you so much. Wishing you all the best.

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@markymarkfl

I had lost 30 pounds (diet + exercise + cancer) prior to my Stage-2 PDAC diagnosis, and managed to regain it all while on Folfirinox for 6 months. Lots of meat/protein/fat in my diet. Heavy whipping cream in my coffee accounted for about 800 calories per day.

After 6 months of chemo, I had the Whipple, and lost about 15 pounds in the following 4-6 weeks, but have been stable ever since. I had to start Creon and cut back on the fats, but even after 4 months on a new chemo since my recurrence, my weight is still stable. Still eating lots of protein.

If your husband is not eating enough, then he needs the most calorie-dense nutrients he can get. Smoothies and shakes might fit the bill. Patients also absorb less nutrients after a Whipple, so there might be some other vitamin/mineral supplementation required beyond just enzymes. I was getting vitamin B12 injections for a while to fight fatigue (and low B12), which gave me enough energy to want to eat.

For appetite, my dad has been taking megestrol during his treatment, and eating like a horse. You might be able to get a prescription for medical marijuana to stimulate appetite, but your access and mileage may vary. I've found the non-psychoactive CBD gummies and oils helpful in calming my digestive tract. I can't say they stimulate appetite, but are a little bit calming and relaxation-inducing and nausea-reducing, which makes eating just a little more pleasant.

The psychological aspects of past nausea can also induce fear of eating in the future. Reflux was an issue for me while on Folfirinox, so I had to make sure I didn't lie down in bed too soon after a meal. I would often nap sitting up in a recliner after meals, and avoid drinking too much fluid with meals to prevent food from sloshing around, and focus on thicker foods that "stayed down" easily.

Wishing you both the best!

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Thank you for all the information. I’m wondering if Creon would be better than Zenpep. Not sure if there’s any difference between the two. All our best.

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My husband was on Fulfirinox and his appetite was fine for 7 treatments. He tolerated it well, but it did not reduce the tumor. So he was switched to gemcitibine abraxane a few weeks ago, and he lost his appetite, and is much more tired. He says everything tastes like metal. I bought him some flavored muscle milk that I mix with ice cream and strawberries in a shake. (He wants the chocolate version now.!) Even though he has tried to eliminate sugar from the diet so as not to feed the cancer cells, I do put some regular ice cream in the shake. I also alternate with Halo Ice cream (no sugar, low fat) or Breyers low carb ice cream. He's been having a boiled egg for breakfast with banana and fruit. I made banana bread with a sugar free cake mix and he liked that. Soups are good too. Dinners are difficult to appeal to him- sometimes he tolerates pasta, but he says everything has no taste. He did ok on soft salmon and mashed potatoes one night. Did you try scrambled eggs--maybe w some melted cheese?

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@k13

My husband was on Fulfirinox and his appetite was fine for 7 treatments. He tolerated it well, but it did not reduce the tumor. So he was switched to gemcitibine abraxane a few weeks ago, and he lost his appetite, and is much more tired. He says everything tastes like metal. I bought him some flavored muscle milk that I mix with ice cream and strawberries in a shake. (He wants the chocolate version now.!) Even though he has tried to eliminate sugar from the diet so as not to feed the cancer cells, I do put some regular ice cream in the shake. I also alternate with Halo Ice cream (no sugar, low fat) or Breyers low carb ice cream. He's been having a boiled egg for breakfast with banana and fruit. I made banana bread with a sugar free cake mix and he liked that. Soups are good too. Dinners are difficult to appeal to him- sometimes he tolerates pasta, but he says everything has no taste. He did ok on soft salmon and mashed potatoes one night. Did you try scrambled eggs--maybe w some melted cheese?

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Thank you for all your info. I too have been making smoothie shakes with Fairlife Protein drinks, frozen fruit, xtra protein powder and vanilla ice cream to up the calories and protein. His oncologist gave him a prescription for the metal taste and salt water or baking soda mixed in water has helped with metal taste too. Do it before eating. Breakfast used to be his favorite meal before all this, now he can’t even look at an egg. Try to have a variety of things to offer, some work, but his usual favorites are no more. We are now trying to eat some sort of protein snack every 2 hours. He finds it so hard that he can’t even think of what he might enjoy anymore.
Is your husband still receiving chemo? I hope his recovery is swift and your lives can move past this with only better moments. Thank you for all your suggestions❤️🙏

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