Whipple procedure and follow up chemo

Hello @dakotarunner and welcome to Mayo Connect,

While I've not had pancreatic cancer, I have had three surgeries of the upper digestive tract to deal with a rare form of cancer, neuroendocrine tumors. Eating small frequent meals is the most important part of this type of surgery, so I'd encourage you to practice mindful eating.

I would like to invite another member who has discussed pancreatic cancer treatment into this discussion. Please meet @marvinjsturing. Perhaps he can share from his own experiences.

@dakotarunner I had my Whipple on June 5 of 2014. The surgeon removed most of my pancreas, 1/3 of my stomach and my duodenum. What was left of my pancreas was so bad that the surgeon did not reattach it to my digestive system. I was diagnosed as Stage 2b. Cancer was found in the tumor on my pancreas and in 1 lymph node. I was released from the hospital on June 11 and started chemo on July 22. It was 5 years ago, but if I remember correctly, I was given Tylenol, an antihistamine, a steroid, anti-nausea medicine and finally gemzar (gemcitabine). I usually took more anti-nausea medicine at night on the day of my chemo. I did this for 3 weeks and then had one week off. The treatment lasted for 6 cycles. After my first chemo, I went to work. That only happened once. After every other chemo treatment, I went home and slept. It was the antihistamine that made me tired. The chemo never made me feel very sick. After every 3 chemo treatments, I was given neulasta. For me, that was worse than the chemo. My legs just above the knees just ached from the neulasta. As far as fatigue, there were days that I felt good so I got ready for work. That effort wore me out and instead of going to work, I sat down in my recliner and slept until noon. Your local oncologist will be able to tell you about your options for treatment. I hope things go as well for you as it did for me.

Thanks, @marvinjsturing, for providing some personal experience with the Whipple procedure. I'm sure that this will be helpful to @dakotarunner.

I am also wondering how you handle eating meals. Did you need to start eating small frequent meals as well? If so, are you still following this type of eating plan?

@hopeful33250 Right after my surgery, I had to eat frequent small meals. Now, I eat 3 regular meals and a bedtime snack. Because I no longer have a pylorus (valve between the stomach and duodenum), bile was backing up into my stomach and causing problems. I now take sucralfate before every meal. It is typically prescribed for people with ulcers.

I started with small portions about 5 times a day. Now, 2 months after surgery, I have 3 meals, and some sort of small snack between them, and in the evening. It may be some apple slice, cookies, ice cream, popcorn, or a sandwich. I know that is not the best diet, I try to limit my portions, but find I can put down a pretty good amount with out discomfort most of the time. It is not the amount I used to eat. I lost of 40# (204# down to 160#) and hate to look at myself in the mirror. I would like to get back up to 185, and could live with that. I am getting out to walk the dogs a mile or or more at a time, and have been doing some light outside chores. Was at a follow up at Mayo on 4/1, and they thought I was doing well, even though I think I should be farther along on getting back to my new normal. Other Whipple survivors I have visited with say I am doing well, so I need to ramp up my patience factor. Am curious about your Whipple experience, and if you had follow up chemo. A sincere "Thank you" for you reply.

@dakotarunner I started at 293#. I dropped down to 213#. Now I'm back up to 235# coming up on 5 years after my surgery. Keep up the exercise to build up your strength and give yourself some time. I'm guessing you'll eventually put some of that weight back on.

Thank you for the info. I just need to detune and make myself wait for the good to come. This week is the first week I have really been able to notice improvement in feeling better physically and mentally.

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?

I had the Whipple on 2/8/19. I can eat, even much more than I should considering the "small potions" instructions I received after surgery. I got into trouble after I got hoe as I was on a high protein diet, and my stomach could not yet handle it. I ended up back in the local hospital for a week. I am not taking any enzymes, as I had a follow up check up at Mayo Rochester on 4/1, and the experts said I was doing well, and did not need the at that point. I lost of 40 pounds before and after surgery. I have gained back 4+ lbs. I do not know if I will ever get back to 204, but will settle for 185. Went down 4 inches on waist size, so had no jeans to wear. Most of my shirts are XL, but luckily, some are larges.
Now and then I may have some pain after eating, especially if I east too much. Had a small problem with diarrhea, earlier this week, but took some Kaopectate, and it took care of the problem. I start Fiofirinox chemo on 4/22, so I am pretty sure diarrhea and I will be meeting again for 6 months. Oncologist says she can help with it. Best to you and your husband. It is a difficult journey that we are on, but one must stay positive, which is not an easy thing to do.

Thanks Dakota, good to know we’re not alone! This is a tough and lonely road with Pancreatic Cancer. Especially since I have stage 4 breast cancer
and I’m now my husband’s caretaker . We’ve switched roles! Hand in there!