Hello @bede and welcome to Mayo Connect. I can certainly understand that you want to learn from others who have also had a Whipple surgery. It is great to have an idea of what to expect. We have several members on Connect who might help you understand the recovery process. Here is a link to one of those discussions.
https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

I would like to invite some members to discuss their experiences (or their family member's experience) with you including, @dakotarunner @susan2018 @marvinjsturing, and @dianamiracle.

@bede, did your doctor suggest radiation or chemotherapy after surgery or will this be determined later on?

I was diagnosed in 2012 with stage III borderline resectable pancreatic acinar cell carcinoma (PACC) in the head of the pancreas. It was initially staged as IIb but upon gross morphological examination at the start of the procedure, it was noted that the tumor was in contact with the portal vein. That resulted in being restaged as III, locally advanced, borderline resectable. I had my surgery at an NCI designated Center of Excellence in Cancer Treatment with a pancreas program and surgical oncologists on the team that had performed a very high volume of Whipple procedures and liver transplants so both were highly skilled in vascular surgery allowing surgery to proceed…just a few of the reasons why you want to be treated at a large medical center with surgeons that perform a hundred or more Whipple surgeries per year and not at a small regional medical center where few pancreas patients are treated.

Time in surgery can vary from about 4 hours on average for a straight-forward uncomplicated procedure to more complex ones requiring 7-11 hours. With the portal vein resection, I was in the OR a total of 11 hours with the surgery taking 9.5 hours. The waiting can be nerve-wracking for the family waiting on word on the outcome of surgery. Recuperation can vary and generally ranges from 7-11 days. Some patients are released earlier and others can be in for 2, 3 or 4 weeks. The key is in the GI tract waking up and being able to digest food. My stay was a total of 16 days because of the added portal vein resection and GI tract a little slow in waking up. Otherwise there were no complications.

Major surgery can take a lot out of you physically. You have to build up stamina, muscle tone, strength and lung capacity. I was doing 50 mile bike rides up to 10 days before my diagnosis and was amazed at how much stamina was lost and decrease in lung capacity resulted from the long surgery. Gaining weight back was another challenge and that became easier once I was prescibed pancreas enzymes supplements. I had daily exercise goals and kept to them even when feeling fatigued. I kept a positive outlook and pushed myself to reach or exceed daily exercise goals and that helped in rebounding faster. I returned to work full-time 8 weeks after my surgery.

I have a very good quality of live and the new normal is not much different than the old normal. I eat much of the same foods I enjoyed before surgery generally avoiding fried, fatty foods but now and then will have small amounts of something friend and tolerate it with supplemental enzymes.

Thank you for words of encouragement. I am 80. I do go to pool 3-4 days a week for 50 min or so. I try and do. A restorative yogi class for older people. I guess the success is dependent on your physical shape and tgen afterwards exercise.

Exercise helped me with recovering from the surgery and tolerating side effects of chemo. PanCan.org has several articles on exercise suggestions for pancreatic cancer patients-

LetsWinPC.org just posted this article in the past week-
https://letswinpc.org/managing-pancreatic-cancer/2022/07/06/execise-during-cancer-treatment/

Hello bede. I had Whipple surgery in March of '19. I had been very ill for a month before surgery, and was being fed thru a tube for th4ree weeks before surgery, which put me in a not so good position for surgery, but there was no choice. I made the BIG mistake of eating too much too soon. I paid the price for that mistake and spent a few extra days in the hospital. Was home for a week, and ended up back in the hospital with severe pain and dehydration. Got intestinal tract finally working and back home. Once the bowels started working, things got better fast. Eight weeks after surgery I went thru 6 months of chemo The main thing I learned during the Whipple, and especially the chemo was to get prepared as much as possibly physically, but even more important mentally and emotionally. I pushed myself hard after surgery and during chemo, and still push myself hard. I count each day as a blessing and would do it all over again if I had to. You will do fine.

Thank you for words of encouragement. I’m on chemo, trying to shrink tumor and can’t eat so drinking my meals.

I am 84, diagnosed Sept. 2021, Type 1/II. Had 3 months chemo then Whipple March 23. No more chemo(too old), just CT scans. Feeling pretty good, working on increasing stamina. Spent 1 week in hospital after surgery, no complications. Advice: make sure you get enough calories after surgery! You may not want to eat, but you can drink. Use Premier Protein drink for protein, Ensure or Boost for carbohydrates (I used all 3). Each is about 200 calories, I needed a minimum of 1200 calories so this meant at least 6 drinks per day. Initially I was using only 3 per day(thinking 1 per meal) - but I was really starving myself - and feeling terrible. My PT alerted me, I increased the drinks to 6 per day. It took 5 days but suddenly I felt better! Had stomach cramps and my GI told me to increase Creon to 2 per meal. Again took 5 days to feel good! Good luck to you!

Greetings:
I'm a 68-year-old male and was diagnosed in March 2022 with stage II Pancreatic Cancer. I am being treated by an oncology team at Froedtert Hospital in Milwaukee, WI lead by Dr. Douglas Evans. To date, I have had 3 treatments of Folfirinox (which failed) and 7 rounds of Gemzar/ abraxane. My CA-19-9 went from 318 in March, to 813 in May to 316 in July. My last CT scan was July 11th with partial results showing:

"(Pancreas: Ill-defined hypodense tumor in pancreatic head
measures about 3.1 x 2.4 cm (6:138) versus 3.4 x 2.6 cm
previously (remeasured 6:141). Upstream pancreatic duct
remains dilated up to 4 mm. Stable 8 mm enhancing nodule in
uncinate process)".

Not sure what all that means but my doctor said he wasn't too concerned about the lack of shrinkage (he used the "house" analogy) and suggests that I start another round of Gemzar/ abraxane, then a CT scan in 4 weeks to evaluate results. If the CA19-9 numbers don't come down sufficiently, then I'd move on to 6 weeks of radiation/chemo, then a four-week hiatus with The Whipple Procedure to follow.

Questions: I have lots of them. First and ....foremost. The 5-year survival rate is all over the map. I'm sorta clinging to 40%, which appears to be on the very, very high end.

So, those of you that have surpassed this precious milestone what are you doing to maintain your health?

1). Your diet.... anything special? Do you eat foods containing sugar and if so, how much? Fruits? vegtables? Other? Anyone on the KETO Diet?

2). Daily exercise: Any special programs or workout schedule? My wife and I try to walk 2-3 miles each day. Before my diagnosis, I was walking 5 miles, 5-6 days per week for the past 12 years.

3). Alcoholic Beverages. Do you consume any? Wine, beer, spirits.....if so, how much?

4). Are you or have you received or continue to receive treatments of chemo, or?

Like all pancreatic cancer patients, I want to survive this thing. Anything tips and/or suggestions will be SO VERY MUCH APPRECIATED!

Thank you so very much!
tpl

This was a MRI.

Thank you for your responses. It helps, knowing there are others with same issues. I should find out Aug 2 when surgery is. Right now, I have one more chemo tx begire surgety. They are tough.