Whipple procedure and follow up chemo

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.

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?

Wondering how your chemo went. My husband just started his chemo after Whipple. He is doing the FOLFIRINOX. He is extremely uncomfortable after 1.5 weeks and has lost a lot of weight throughout his illness. The anti nausea medication is not working. He will go in for his second treatment next week. He is on a every other week for 6 months frequency/regimen.

The discomfort could be post Whipple as much as Chemo. I did about 2-3 weeks post surgery and it lasted for a month or so. Drank a lot of bone broth to help with inflammation. Team recommended that I try Galvescon along with Zofran. It really helped. I also had my Folirinox reduced to 75% and things turned around slowly. I will think of you and hope things improve. eating small meals all day is so much better than 3 larger. Saltines and peanut butter is good for stomach and good protein. let us know how it improves. Oh, I get Atropine and dexamethezone with each Chemo session....really helps as well.

I started FOLFIRINOX about 8 weeks after Whipple. Had trouble with nausea right out out of the gate, but thy switched meds around a it got better. I was very sick for a period of about 5 weeks before Whipple, and had lost 25% of my total body weight before Chemo. I was ready to quit at week five, but they backed the dosage of a ways and things got better. I also got some Lorazapam (sp) with the infusion and that seemed to help, but they would not let drive home on those days.Food was no problem, but I had been fed thru a tube for three weeks before, and was so excited to actually get to eat. Chemo seemed to get better when they backed the meds off. It took a little longer each time to bounce back from a session but seeing I did not have anyone on my dance card, that was OK. Got out and walked a lot, which kept my mind off the chemo. Food works different for everyone. I was eating 3 grilled cheese sandwiches for breakfast. the did not make me sick, so what ever works is fair game. Hang tough! Chemo is not only a physical battle, but a mental and emotional battle. Keep coming back to this site so you can talk to others. Best wishes

Thank you both so much for responding! He skipped a session of chemo and felt much better. They did believe the chemo aggravated the surgery site. When he went back this week they reduced the on-site infusions to 85% of what they were. The symptom he had wasn't nausea but more cramps. They cramps have reduced to very intermittent "bouts". We will see how it goes after he returns the 5FU pump this time. Seems like he had a very rough few days last time.

Hello, I had the whipple 1/14/2022. I did okay with it but have to take the creon..also puzzling over how to really use it without over or under use. My cancer on the bile duct along w the bile duct, gall bladder part of small intestine/some pancreas all removed and reseccioned. Unfortunately, have the systemic mircro positive cells in the body. No Metastisis; clean margin getting out despite 8 of the 15 lymph nodes positive... all out and clear.
Started chemo 5/4/22 without the pump as I didn't have the port, but second infusion w/ 46 hr pump 5/18. I was much sicker after that infusion... 8 days (first one I was fine after 3 days); I'm struggling with the eating issues and feeling so sick (seasick feeling) despite the nausea pills. Im 75 and live alone. Will have to hire some help. I can't imagine how this will go if it's cumulative for 10 more treatments. Please comment if you have ideas, tips, and ways to continue I haven't thought of. thanks Vera Parr in DE

Don't worry about accumulation just deal with each treatment as it comes. Why did not do a port? It makes it so much easier especially if you with pump ( I assume 5FU).
I find that antinausea meds cause a bad feeling for me. I rely on Zofran and Gaviscon instead. As far as Creon, they told me to increase as needed to help with eating and not to worry. I am now off it and occasionally use Zofran. I have also found that heavier meats at night do not work well for me so I try to get those at lunch and eat lighter at dinner. To begin with after surgery I ate 5-6 small meals a day, even a couple of saltines with peanut butter an that really seemed to help with side effects and keeping my weight stable.
Any time you have issues, talk with your treatment team and change where needed. I forgot to say that they would give me Dexamethasone before each chemo and then Dex tabs for the 2 days I brought a pump home. I also have type 2 diabetes and have to adjust insulin for those few days but we have found the balance. My team really works hard to help me BUT you have to be candid and speak up as every patient is different and they can not guess everything that might be impacting you.

Hello BB21,
I appreciate your comments and feedback. I will definitely ask for a better solution to the post nausea/queasiness I had for so many days after the pump was removed. I don't take Gaviscon... I'll ask about that. Post 1st infusion, after 3 unpleasant days, I was fine with what they gave me. I also haven't heard of Dex tabs, will ask if that might help. The antinausea meds certainly didn't make me feel good or chase away queasiness. Thanks for the education. How many cycles do you have planned, I have 12 (just shy of 6 mts). I didn't know if is going to be possible to be off the creon at some point. I'm missing 20-30% of the pancreas I was told. Thanks for responding and so quickly. Vera

Since I have lesions in the liver and a rare genotype that occurs in only 1 % of Pan CA, I will be on some treatment to try to keep it at bay until I die...which I hope is much later. I start gemcitabine plus cisplatin next Wednesday. This is my 5th chemo combo plus one clinical trial with an immunological therapy since diagnosis. I am waiting on another trial with targeted treatment to show its face. A couple of combos I had to stop due to low platelet counts. The Clinical trial combo gave me the worse side effects...skin and yeast infections and some digestive...but life is worth it.