Whipple procedure and follow up chemo

Posted by dakotarunner @dakotarunner, Apr 4, 2019

I had the Whipple procedure done at Mayo 2/8/19 and got out of hospital on 2/19. Had to go back to my local hospital a week later for dehydration pain and nausea, and was there for a week. Just had follow up at Mayo 4/1, and the surgical crew thought I was doing well. I can eat, and have to limit myself at meals, as I tend to want to eat too much.I lost 40 pounds, and still feel super weak and get fatigued easily. Mayo oncology want me to start chemo at 2 months out, and I have an appointment with a local oncolog4/10. My question is am I smart to be looking at chemo when I feel so worn out. I see chemo recommendation for starting at 8 to 12 weeks after surgery. Also, am wondering what chemo course to take. Mayo liked the Flofirinox treatment.. I was tabbed at Stage II after the Whipple. They did the normal resection, but also resection a section of my transverse colon that appeared to be cancerous.
the overall diagnosis was Pancreatic cancer. I would appreciate any input. Thank you in advance

@moo1

My husband celebrated his one year Whipple surgery in February. He had a “rarest of rare tumors”, no spread, but no available prognosis since
follow up treatment is unknown for his bizarre tumor cells. He is now taking Creon enzymes to help with pain after eating, but he still suffers from unexpected diarrhea occasionally. Very disconcerting when you are driving or in a social situation. Do you or others have the same problem?

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Creon needs more explanation from its manufacturer, or maybe they just can't cover all the side effects. I still can't get it right, between bloating and loose stools. If I take it with meals, I get bloating from gas and regular bowel movements. If I take it 30-60 minutes before meals, there's no gas problem, but I get loose stools and sometimes diarrhea. My Whipple surgery, Jan, 2019, was successful, and I have no other underlying conditions. After surgery, and during my five months of chemo and radiation, my GI doc and my oncologist had me taking 75,000 IU of Creon with each main meal and 25,000 with snacks over 200 calories. I'm still doing that, trying to figure out how to strike a balance about when to take it–before or with. I'll be grateful to hear from anyone with ideas and experience.

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@luckyguy

Creon needs more explanation from its manufacturer, or maybe they just can't cover all the side effects. I still can't get it right, between bloating and loose stools. If I take it with meals, I get bloating from gas and regular bowel movements. If I take it 30-60 minutes before meals, there's no gas problem, but I get loose stools and sometimes diarrhea. My Whipple surgery, Jan, 2019, was successful, and I have no other underlying conditions. After surgery, and during my five months of chemo and radiation, my GI doc and my oncologist had me taking 75,000 IU of Creon with each main meal and 25,000 with snacks over 200 calories. I'm still doing that, trying to figure out how to strike a balance about when to take it–before or with. I'll be grateful to hear from anyone with ideas and experience.

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@luckyguy – I usually take a few bites of food and then I take the creon. If I am only eating vegetables and a carb intake 2-3 pills. If there is any fat in the food intake 3-4 pills. Even two years out my stools at time are loose, and I always have gas. I suppose it’s a side effect I live with. If the gas gets too intense you can always take an over the counter med for this. Good luck on your journey!

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@dianamiracle

@luckyguy – I usually take a few bites of food and then I take the creon. If I am only eating vegetables and a carb intake 2-3 pills. If there is any fat in the food intake 3-4 pills. Even two years out my stools at time are loose, and I always have gas. I suppose it’s a side effect I live with. If the gas gets too intense you can always take an over the counter med for this. Good luck on your journey!

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I also have problems with Creon dosage, but as to gas, my doctors recommended I try either GasEx or Beano. I have had better luck with Beano, but either one helped control gas for me.

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My wife had surgery 2/20/20 which removed 60% of the pancreas, gaul bladder, spleen, 23 lymph nodes and arterial and duct re-routings. This was a modified Appleby, not the more familiar Whipple. The good news was that all the biopsies were negative and she was not required to get additional treatments. The bad news has been the recuperation. She wasn't overweight before the surgery and lost 23 pounds and hasn't had a day without diarrhea, gas and stomach pain since. She hasn't been able to put on any weight despite eating over 2500 calories/day. She has experimented with creon and zenpep with taking as little as 24,000 units with a meal and as much as 288,000 units (yes, that was doctor guidance). She takes the dose after and initial bite of food. Last month, the oncologist prescribed cholestyramine to sequester bile in the hopes of reducing the diarrhea frequency. The cholestyramine introduces a catch-22. It's prescribed to be taken with meals but is not supposed to be taken within 2 hours before or 4 hours after other medications. For a patient still taking 6 feedings per day with creon this would mean that there's no correct time to take the cholestyramine. Should she just take the cholestyramine with the meal as prescribed. The pharmacists and doctors haven't been able to provide definitive guidance. The cholestyramine initially increases the stomach pain but then it settles to a better than without cholestryamine pain level.

Has anyone figured this out?

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