Total pancreatectomy challenges

I had a distal, but wanted to let you know I’ll be praying for you for a smooth surgery and alleviation of your current symptoms. Please keep us apprised.

Thank you!

Call Dr. Evens in WI Froedtert Hospital for second opinion He will do it via Zoom call He does 140 Whipples a year.

Christie,
My wife went through a total pancreatectomy almost 9 years ago. It was accidentally found early on.
You have seen several surgeons but have they been at the major cancer hospitals? My wife was at Mem sloan kettering in new york city which is considered the second best after MD Anderson in Texas (not sure what city). Also Roswell Park in Buffalo NY is very good. Or if you are closer to Cleveland clinic or the Mayo clinic (Rochester Minnesota). We traveled 350 miles to see the best surgeon. Her surgeon is now head of surgical oncology at Duke in Durham NC. Dr Peter Allen. You must get the opinion of doctors who do this surgery 5 or 10 times a month not docs who do it 5 or 10 times a year!
Your whipple took the anterior of the pancreas I believe. That is where the enzymes come from. The distal or tail is the insulin, so my wife is taking pancreatic enzymes (she takes Creon but there are other brands) and is a type one diabetic.
When she doesn't take enough enzymes, she gets more diarrhea. Surgeons tend to not prescribe enough enzymes after whipple for fear of too much can cause an intestinal blockage but not enough causes diarrhea. The literature for Creon says the range to take is from 500 units per kilogram body weight per meal up to a maximum of 2500 units per kilo body weight per meal. One kilogram equals 2.2 pounds. If you are 100 lbs then 100 divided by 2.2 = 45 kilos. Then per meal take 45 X 500 = 22,500 units minimum up to 112,500 units max per meal (2500 X 45=112,500). So if you take 12,000 unit capsules, that is roughly a minimum of 2 caps up to 9 caps per meal. My wife is 61 kilos and takes between 6 and 10 caps per meal of her 12,000 unit caps = a max of 120,000 units per meal. Please go over this with your surgeon to confirm that I am correct since I am not a doctor and I am not prescribing.
It took a while to get accustomed to managing her type I diabetes but she does fine. She uses a continuous glucose monitor on her arm (like on the TV commercials) and an automatic insulin pump that gives her insulin automatically. But she started out using a finger stick test and syringe injections until she was taught the automatic system. An Endocrinologist who specializes in diabetes will help you.
Since the bile duct gets moved in this surgery, sometimes bile causes some indigestion. My wife also takes a proton pump inhibitor, omeprazole or pantoprazole indefinitely. This is also to prevent ulcers due to the acid in the stomach and the acid affects on the removal of part of the small intestines.
This all sounds overwhelming, but she is managing for 9 years and you can also.
But you need to get advice from experts at the best cancer hospitals first. Maybe you have since you didn't mention where you are seeing doctors. I would think if you are in the south, Birmingham has a great medical center. I think Emory in Georgia is well known. If in Boston area, Dana Farber and Mass General. Out west the Mayo clinic. West coast must have good cancer hospitals but I am not familiar with them. And east coast I'd see doctors at Mem Sloan Kettering, Dr Jarnagin is a pancreatic surgeon and Dr Eileen O'Reilly is a great pancreatic oncologist to get opinion from at Sloan Kettering. Please.

Hi @christie4re
Sorry to hear you are going through all of this. I can certainly share my experience if it helps.

I had a total pancreatectomy about 6 years ago after finding multiple pancreatic NETs. As it turns out, I happened to win the genetic lottery and have MEN1 that I did not inherit from my parents. (yay for me!)

Since surgery, I manage the resultant diabetes with an insulin pump (Tandem x2) and a CGM (Dexcom G7) and Creon for digestion (36000 - 3 with meals and 1 with snacks.)

All in all, I lead a fairly normal life albeit I do try to exercise regularly, watch fat intake and maintain a lower carb diet. My last A1C was 5.7 so the blood sugar is manageable if you watch what you eat. At the time, it seemed insurmountable to me but I took it day by day and here I am almost 6 years later.

I had my surgery at Cleveland Clinic and am still followed by them to this day. I recall the comment that the HPB surgeon made to me at the time - it's not necessarily the surgery that is important but more the aftercare since you have to manage juggling digestion, diabetes, insulin rates, and carbs at the same time. The key for me is to use extended boluses when eating to account for the carb/fat digestion curve. Happy to help if you have any questions or need an ear. Take care and God Bless
-Matt

Hi Matt
Thank you for sharing your journey. Can you explain what you mean by
“ The key for me is to use extended boluses when eating to account for the carb/fat digestion curve.” My husband is 8 weeks out from total pancreatectomy and has lost 20 lbs. His oncologist just ordered a test to see if he needs more Creon and I believe he does because of frequent bouts of diarrhea. He is 68kg and takes 36000 with a meal right now. What is an extended bolus?

Hi @lar38 -

I weigh a bit over 200 #'s and have taken 3 (36,000) Creon with each meal and 1 (36,000) with my snacks. I have not experienced a lot of diarrhea. Taking just 1 seems low to me. There is a Creon dosage chart at http://www.creonhcp.com/dosing-calculator. It indicates that at 68kg you should consider taking 1-5 (36,000) at meals and 1-3 for snacks. If it were me, I would increase my meal dosage by one capsule and see how that goes for reducing symptoms. This is why he is losing weight probably, because of lack of absorption. He should try snacking in between meals with a creon dosage to help regain some of his lost weight if he is underweight, at least that is what I would do.

When I had this operation, I pushed the endocrinologist to get me started with the Tandem pump and Dexcom sensor, which acts like an artificial pancreas, to a degree. Pumps and sensors are the best option for blood sugar control for patients like us. Initially, I was using insulin pens and I was not able to keep my blood sugar levels under control and my A1C was higher than it needed to be. The pump allows you to extend your insulin bolus, as needed. For example, if I'm going to eat a meal with 50g of carbs, the carb ratio for me is use 1 unit of insulin for 15 g of carbs (this differs for each diabetic throughout their diabetic journey) so my pump would want me to take a little over 3 units of insulin. I can set an extended bolus for meals that contain more fat because fats slow the digestion. As a result, I can choose to have 60% of my insulin immediately and then over a period of time, say 2 hours, I can have my pump deliver an additional 40%, the remainder of the 3 units of insulin. This helps tremendously to reduce glucose spikes and reduces the A1C results. My last A1C was 5.9, and normal levels are up to 5.6. If you are diabetic it is my understanding that they would like your A1C to be under 7.0.

I hope this helps. Please let me know if I can offer further assistance.
Matt

This is very helpful. Thank you so much!

This paper is focused on total pancreatectomy (TP) for IPMNs but has some applicability to pancreatic cancer as well:
https://pubmed.ncbi.nlm.nih.gov/27215900/
I had Whipple for PDAC 3 years ago; all declared clean at the time, but recurrence at the surgical site within 4 months.

I now wish I had undergone TP either at first diagnosis (instead of Whipple) or immediately after the recurrence. I became dependent on insulin shortly after first diagnosis, and on enzymes after Whipple, so TP would have been nothing worse.

If the entire pancreas had been removed, there would have been no potential for other malignant cells to hide and no more pancreas tissue prone to turning malignant. The surgical site and anastomosis (rejoining remnant pancreas to jejunum) creates a tight and busy intersection of organs. The recurrent tumor eventually grew into my stomach outlet, creating a need for TPN feeding through a central line and a gastric vent (tube coming out of my stomach) that seemingly could have been avoided.

I have zero medical training, and the above is just my own perception of the rear-view mirror, but I think in summary that I would have been better off with TP. Best wishes with your own future!