Husband had Whipple surgery and chemo: He's uncomfortable

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.

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.

@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!

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.

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 am praying things will go well for you. I can't believe it's almost 5 years since I was diagnosed. Do you find the whipple surgery has left you with many issues after you eat. I am on a couple of pills that help somewhat, but always feel this pressure in my tummy.

@joyaf , I am in Canada and had surgery in Toronto.

@gardenlady1116 , may I ask what kind of allergic reaction you had?

It's probably not relevant, but my first couple treatments on FOLFIRINOX unleashed absolute misery on my sinuses. It became a complete non-issue if I took a Zyrtec before the infusions started. I wish it were that simple for everyone, but hope raising awareness makes it simpler for at least a few folks.

Also, are you making a major change to your whole chemo regimen, or just removing/reducing the oxaliplatin? I'd be sad to see you switch from a treatment that's working. We reduced the oxaliplatin in my chemo by 10% for the last 4 infusions (out of 12) due to my neuropathy. I wasn't sure it helped, because it took about 6 months after my last infusion for the neuropathy to go away, and my neurologist described a phenomenon called "coasting" in which the neuropathy gets worse even after stopping chemo, before it gets better.

Aside from various clinical trials, I'm not sure what alternatives there are other than Gemcitabine+Abraxane+Cisplatin. The cisplatin is not supposed to cause as much neuropathy as oxaliplatin, but the Abraxane definitely does. That's what I'm on now, and I've got the neuropathy to go with it.

Thanks for sharing your story. I have neuropathy and am due for a change in chemo due to an allergic reaction to oxiplatinum. I am hoping the neuropathy will get better. I had a great response with reduction in size of the tumor. I would have toughed out a little more of the oxiplatinum but it is out due to the severe allergic reaction.

Thank you foy sharing your story. You sound like a very mentally strong & optimistic person!
May I ask, did you have your Whipple surgery at Mayo? If so at which facility and who was your surgeon?
I have a polyp in my bile duct and a growth on my ampulla, no indication of cancer. But have been told I should have the Whipple surgery.