Husband had Whipple surgery and chemo: He's uncomfortable

I was on oxaliplatin too and was supposed to get 12 doses. We had to quit at 11 and still wonder if we should have stopped sooner. Might not have such severe neuropathy. I have numbness that is in my feet and up my legs. Causes some balance problems. Was also on irinotecan and 5FU and folfirinox. I am trying to get some answers as to why after all this time, I get such pressure in my stomach area after eating. I try to keep the meals smaller - don't always succeed.

I had the Whipple two weeks ago on 4/24/2023. I had nine chemo treatments prior to surgery. The surgery was successful, although, I still have a partially open incision. Also, my neuropathy has become worse. This has negatively impacted my sleep. It coincided with an increase in Gabapentin (which I stopped today). The first two weeks after surgery are tough, I am not going to lie. Pain management was a full time job. I was cleared yesterday to eat any food. There will most likely be an additional three chemo treatments. In a month or so. TBD. We keep fighting. It’s not easy.

@icelander19 I take creon to aid with digestion. Dose is based on my weight and/or amount of fat/protein/portion size in my meal. Occasionally I will have some discomfort but not frequently. The info I was given was to take 500-2500 units of creon per kg of body weight with each meal, or 300-1800 units per gram of fat. To slowly increase dose until symptoms like gas, bloating and diarrhea disappear. I am at close to the upper limit and generally handle food well. Extremely fatty foods still bother me. I also just found out I have a hernia at the incision site that may be the source of some of the discomfort I do experience. Best wishes! Your five years is something to celebrate!

Thanks for the info on Creon. I used to take enzymes - for quite a while after I had the surgery. But then decided to stop. I take Domperidone twice a day half hour before meals and it has helped. Still get the pressure of gas building up a lot of the time. When that happens, I get my heat bag in the micro and use that to comfort my tummy. It's something I can live with. How did you find out you have a hernia? I keep wondering about something around the incision area. I see a doc next week so will ask about that.

You're so right - 5 years is a great accomplishment. I have been very lucky. I wish the best to you as well.

exciting news this morning.The germans have discovered a vaccine for pancreatic cancer specific to people that have had surgery.To keep cancer from coming back.They are using it at Johns hopkins and sloan kettering.

Why only for those who have had surgery? But I did see news

Not sure.

@icelander19 my oncologist scheduled a surgical consult for an endoscopy due to some symptoms I had been experiencing. Surgeon had a quick visual look at Whipple incision area while I was standing and then again while laying down. He informed me that the bulge was a hernia, and had me feel where it was. I had questioned the bulge long ago (a few months after Whipple surgery, once I started eating myla re normally) and was told that was just how I had healed. I assumed it was a result of the restructured digestive system. I now know what to watch for - at this time they don’t want to repair it as it isn’t causing any problems.

Good Morning @wjk . The size of my husband's tumor was 5.8cm in the head of the pancreas. Partial response to neoadjuvant treatment and at time of removal was 5.4cm. No signs of metastasis on any scans (CT, PET, MRI, and diagnostic laparoscopy) but due to the size he is staged at IIA. 8 rounds of chemo (Folfirinox) pre-surgery and doing the final 4 now (last one is June 13th).

Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8 X 1.9 cm was detected at the head of my pancreas proximal to the extreme lower common bile duct resulting in abdominal pain, light jaundice, very dark urine, abnormal bowel movements, enlarged bile duct/gall bladder/pancreatic duct, grossly elevated enzymes and bilirubin, and a CA 19.9 of 316. The abdominal CT scan showed no other abnormalities. Following an ERCP procedure and insertion of a plastic stent the following day, most signs and symptoms went away over the course of a week. We now are anxiously awaiting a series of appointments at the Mayo Clinic - Rochester beginning in 9 days and very eager to get going. We were initially advised we'd been seen promptly, but it's now been a month long wait and we are concerned the tumor has grown and perhaps metastasized. We hope the tumor is benign and resectable, but are preparing for something worse. Any and all advice welcome. Thanks for sharing your story.