Whipple procedure: What is the recovery like?

Hi @juliew945 and welcome to the pancreatic cancer group. You'll notice that I moved your question to this existing discussion called "Whipple procedure: What is the recovery like?" where @salledell also asked about recovery after surgery and what to expect. Click VIEW & REPLY to read past posts.

@susan2018's husband had surgery about a year ago, and I'm sure she'll have some caregiver tips for you. @dianamiracle @dakotarunner and others can provide the patient perspective.

Julie, will you and your husband return home after he is discharged from hospital or staying in a hotel for a few days before traveling home?

First of all, everyone is different and their course of care and recovery is different. My husband had his surgery at Mayo Rochester. Where will your husband have his surgery? My husband went straight from operating room to recovery room to his room on the floor and was in the hospital 8 days without any complications. He was 73 years old and had had coronary bypass surgery only eleven months prior. I don’t know what visitor precautions are in place now because of the pandemic but I was able to visit then as I wished. I stayed in a hotel across the street from the hospital and went back and forth. When he was discharged from the hospital we stayed in a hotel in town a couple days to be sure we were ready to drive six hours home. His pain was well controlled with a block from surgery and an epidural for several days after. Then he went straight to only needing Tylenol. The only time he took an opioid was just before we drove home so we knew he wouldn’t suffer discomfort during the long drive. At home he did have some episodes of nausea and vomiting and we ended up in the local ER several days later for assistance. The doctor in ER contacted Mayo directly and the surgeon’s physician assistant prescribed additional meds that were effective. He went home with a feeding tube that was placed in surgery just in case he needed it that we flushed each day as well as an injection that was easy to give to prevent blood clots. He never needed to receive feedings from the tube feeding. He began Folfirinox chemotherapy two months after his surgery. He had not received any before surgery because it wasn’t certain that he did in fact have a malignancy, only that he had large cysts In the head of the pancreas that were worrisome. I would be happy to communicate with you as your husband goes through his surgery and recovery. Good Luck!

Curious for those who had Whipple Surgery and have experienced the results (cure? whipple problems?), in hindsight, are you glad you went through it or was it not worth the effort and/or results?

@mscarano I had my Whipple 6 years ago. Last weekend I was able to attend my oldest grandchild's 6th birthday. My cancer came back last December. Heading for Mayo later this week for another scan to determine the best treatment for me. If I had to do it over again, would I do it? Absolutely. Every day of life is a gift from God. I will continue to fight this cancer for as long as I can.

I had the whipple 2.5 years ago at Mayo. It takes about six months for the body to readjust, and every situation is different. After two days I stopped the heavy pain meds as all it did was constipate me. After three days I was on a modified liquid diet. I don’t eat fried foods, and have to steam the hard vegetables. It’s worth it!

We had planned on returning home right away after he is discharged. Is that a bad idea??

Thank you so much for responding back. This is really helpful. My husband is 50. We have been going to Mayo in Rochester and he will have his procedure there tomorrow. He was able to complete his chemo with relatively little side effects and very little nausea so we feel really blessed in that regard. Was there a cause for the nausea and vomiting your husband went through or is that part of the course of healing? We have about a two hour drive back home from Rochester - is is better to stay a day or two before heading home? I should have reached out a long time ago - but it has been a hectic year. My mother had been suffering from Alzheimer's prior to passing in August. My daughter has been suffering from anxiety and it has become much worse because of he dad's cancer diagnosis and, of course, covid-19. I am overwhelmed as a caregiver in supporting each of them and mourning my mom. I worry that I am not doing enough or asking the right questions. Any advice you can offer as we move through the surgery and healing would be greatly appreciated. Thank you.

@juliew945 who is your husband’s surgeon? Dr Truty was my husband’s. Some things to think about when deciding whether to go straight home upon discharge would be how difficult or easy his hospital stay has been, whether they suggest you stay which happened to a friend of mine, what time of day he gets discharged and how comfortable you feel as caregiver with all the meds. I was glad we stayed because once we got to the hotel room and I went to flush his feeding tube I discovered the syringe they had given me didn’t fit his feeding tube. It was easy enough for me to walk back across the street to the hospital and get the correct one. Once he got to the hotel and laid down, I also went back to the hospital pharmacy and picked up all the meds they had prescribed for him. That took awhile but at least I knew the pharmacy there would have everything. Your drive home is only two hours so you have more flexibility. Our drive took all day so I knew getting the discharge paperwork done and getting home all in the same day would be too much for both of us. As for the nausea and vomiting, it takes awhile for the GI system to “wake up” after surgery, especially Whipple, and my husband had the same problem after his cardiac bypass. Walking is the best thing he can do to get all systems going. They’ll start your husband out slow after surgery with sips of water and then clear liquids, etc etc. They give you a menu and you’ll be able to call dietary to order for him (if they are allowing visitors) if he doesn’t feel up to doing it himself. Just go slow before adding easy to digest soft foods and then see how it goes. Small, frequent meals is best for quite some time. My husband “lived“ on scrambled eggs and toast for awhile. Others say mashed potatoes appeal. We also used liquid supplements, my husband liked Carnation Instant Breakfast better than Ensure, etc. He will no doubt be ordered routine meds to aid with digestion, my husband just needed to take them longer than had originally been prescribed. You’ve got your plate full, don’t hesitate to ask me anything that might be on your mind. I’m so sorry you are dealing with your mom’s passing and, of course, concern for your daughter. I have some understanding of anxiety and I have my mother in isolation in a nursing home—so I get it. Again, I’m here if I can help in any way, even just to listen.

@juliew945, all the best for you and your husband tomorrow. You've got this. Keep writing and asking questions. We'll be by your side virtually.

Great to hear your story ! May I please ask if muscle loss can be prevented?