Whipple procedure and follow up chemo

Posted by dakotarunner @dakotarunner, Apr 4, 2019

I had the Whipple procedure done at Mayo 2/8/19 and got out of hospital on 2/19. Had to go back to my local hospital a week later for dehydration pain and nausea, and was there for a week. Just had follow up at Mayo 4/1, and the surgical crew thought I was doing well. I can eat, and have to limit myself at meals, as I tend to want to eat too much.I lost 40 pounds, and still feel super weak and get fatigued easily. Mayo oncology want me to start chemo at 2 months out, and I have an appointment with a local oncolog4/10. My question is am I smart to be looking at chemo when I feel so worn out. I see chemo recommendation for starting at 8 to 12 weeks after surgery. Also, am wondering what chemo course to take. Mayo liked the Flofirinox treatment.. I was tabbed at Stage II after the Whipple. They did the normal resection, but also resection a section of my transverse colon that appeared to be cancerous.
the overall diagnosis was Pancreatic cancer. I would appreciate any input. Thank you in advance

@colleenyoung

@susan2018, you're so wise to ask fellow Connect members questions to prepare you for surgery, what questions to ask the surgeon, post-surgical diet and even where to stay at Mayo. I'd like to bring in @marvinjsturing @dianamiracle and @dakotarunner to help answer your questions. They had the whipple procedure done at Mayo Clinic.

Susan, here are some other discussions to explore on Connect.
– Pancreatic cyst https://connect.mayoclinic.org/discussion/pancreatic-cyst/ where you can read about @bonitav's experiences
– Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

You can also contact the Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

They can also talk to you about how to make reservations when you don't know how long you'll be there.
Susan, Are you at Mayo Clinic Rochester?

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Yes, we are at Rochester.

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@susan2018

My husband and I are at Mayo currently for evaluation of his pancreatic cysts. Although we don’t have a cancer diagnosis the appearance of the cysts is worrisome. Diagnosis wouldn’t actually be able to be determined until surgery. We will be meeting with a surgeon and expect to be discussing the Whipple procedure. What questions did you ask your surgeon and what do you wish you had asked? What do you wish you had known about the surgery and recovery? Any tips on being prepared for diet and cares upon return home? If you had surgery at Mayo, where did your companion stay while you were hospitalized, how did you handle reservations when you don’t know how long the stay will be? Many thanks to anyone who can advise me.

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Good morning. My pc was stage 1b – they caught it early. This is a long procedure, but they never know how extensive until they get into the patient. The duration of the surgery is based on the location and size of the tumor. Mine was pressed heavily on a bile duct and did some damage to the juncture of where the stomach meets the pancreas and where the pancreas meets the small intestine. They had to repair these junctures. As my gall bladder was diseased they opted to remove it. They were able to do this laparoscopically/robotically. Doing the surgery this way versus opening the patient up takes a bit longer under the anesthesia, but recovery time is quicker. I was in the hospital for five days after the surgery. The surgery was at st. Mary’s, so my husband stayed across the street at aspen suites. I lost quite a bit of blood and did require two transfusions during the surgery. They did give me a third transfusion day one out of surgery. As with any surgery they will monitor all vitals and pain. They gave me lots of shots every day alternating between arms and legs. They do monitor your pain level. Personally I do not like oxy products, and I requested dalotil (sp?). After two days when all it did was constipate me I switched to Tylenol and ibuprofen. I was in a little bit of pain, but tolerable, but better than being constipated. Getting up and about after is very important. They will allow your spouse to stay with you on a reclining chair or perhaps a cot if the need arises. The way one digests food does change and it will depend on how extensive the surgery is as to what one is comfortable eating. He may be on creon for every meal he eats, and we can discuss this at another time. I hope this helps you. It’s a long, hard journey, and I wish the two of you well and only good news! Feel free to ask any additional questions you may have.

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@susan2018

Yes, we are at Rochester.

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For a nutritious breakfast, a new restaurant just opened near Chester’s called jerk king, where they may fresh fruit smoothies with almond milk, fresh fruit and chai seeds. Also good for a snack!

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@dianamiracle

Good morning. My pc was stage 1b – they caught it early. This is a long procedure, but they never know how extensive until they get into the patient. The duration of the surgery is based on the location and size of the tumor. Mine was pressed heavily on a bile duct and did some damage to the juncture of where the stomach meets the pancreas and where the pancreas meets the small intestine. They had to repair these junctures. As my gall bladder was diseased they opted to remove it. They were able to do this laparoscopically/robotically. Doing the surgery this way versus opening the patient up takes a bit longer under the anesthesia, but recovery time is quicker. I was in the hospital for five days after the surgery. The surgery was at st. Mary’s, so my husband stayed across the street at aspen suites. I lost quite a bit of blood and did require two transfusions during the surgery. They did give me a third transfusion day one out of surgery. As with any surgery they will monitor all vitals and pain. They gave me lots of shots every day alternating between arms and legs. They do monitor your pain level. Personally I do not like oxy products, and I requested dalotil (sp?). After two days when all it did was constipate me I switched to Tylenol and ibuprofen. I was in a little bit of pain, but tolerable, but better than being constipated. Getting up and about after is very important. They will allow your spouse to stay with you on a reclining chair or perhaps a cot if the need arises. The way one digests food does change and it will depend on how extensive the surgery is as to what one is comfortable eating. He may be on creon for every meal he eats, and we can discuss this at another time. I hope this helps you. It’s a long, hard journey, and I wish the two of you well and only good news! Feel free to ask any additional questions you may have.

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I appreciate your quick response and helpful information. Strange how important every tiny bit of information is when venturing into unknown territory.

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@dianamiracle

For a nutritious breakfast, a new restaurant just opened near Chester’s called jerk king, where they may fresh fruit smoothies with almond milk, fresh fruit and chai seeds. Also good for a snack!

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I walked by this place yesterday and wondered about it. Good to know.

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@susan2018

I walked by this place yesterday and wondered about it. Good to know.

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It’s not fancy but they do have handicap bathrooms which is a plus. Request one

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@susan2018

Yes, we are at Rochester.

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I had my Whipple in 2014. My wife stayed at the hotel west across the street fro St. Mary's. A few weeks ago we drove past there. The old motel is gone and they are in the process of building a new one. I think most motels in Rochester understand that sometimes people need to extend their stay. My surgery was 8 1/2 hours. My gall bladder was already gone. The surgeon removed most of my pancreas, 1/3 of my stomach and my duodenum. He did not re-attach the pancreas to my digestive system. When I had my surgery, the protocol was to have me on an insulin drip to promote healing. The nurse woke me up every hour during the night to test my blood sugars. Don't know if they still do that. I was in the hospital for 6 days after surgery. Get walking as soon as possible. I don't remember a lot of problems with eating – just eat frequent small meals. The 3 1/2 hour drive home was miserable. My wife didn't know if she should drive fast to make the trip shorter or to drive slow so the ride wasn't bumpy. I do wish that I had a pillow to hold over my incision on the way home. We stopped frequently so I could get up and walk. My wife says to make sure you eat at the Canadian Honker while you're there.

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@marvinjsturing

@moo1 I was diagnosed with Type II diabetes 5 years before I had pancreatic cancer so I was used to watching my carb/sugar intake. In my Whipple, the surgeon removed most of my pancreas and did not reattach what was left to my digestive system. That means I am now a Type I diabetic. My diabetes nurse said that gives me more flexibility – I can eat whatever I want and just give myself more insulin to cover what I eat. Even though that may be true, I still try to watch very carefully what and how much I eat.

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Good to have "company" in other folks dealing with pancreatic CA. I started this journey The first of this year. Have chemo every other week and since I'm stage 4 we are not currently considering Whipple. I read that it can take a full year to recover from that surgery so maybe I don't really want to go down that road! I take CREON but knowing how much I have to take with what type of meal is a constant learning. I was eating very little meat before my diagnosis (vegetable-based diet) but my protein is low so I've been eating more meat. I cant do pork in any form, beef only if slow cooked like Swiss steak or stew, and dairy sometimes really bothers me. Small meals, lots of fluids, and remembering to take enough CREON have been key. I am watching the high glycemic index food like white rice and white bread, but then those digest easier when the diarrhea flare, so it's all a balancing act. its so comforting to hear from someone 5years out from diagnosis. Sometimes when I tell people I have pancreatic cancer they start crying. I guess because prognosis is known to be poor. It doesn't help!

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@susandc

Good to have "company" in other folks dealing with pancreatic CA. I started this journey The first of this year. Have chemo every other week and since I'm stage 4 we are not currently considering Whipple. I read that it can take a full year to recover from that surgery so maybe I don't really want to go down that road! I take CREON but knowing how much I have to take with what type of meal is a constant learning. I was eating very little meat before my diagnosis (vegetable-based diet) but my protein is low so I've been eating more meat. I cant do pork in any form, beef only if slow cooked like Swiss steak or stew, and dairy sometimes really bothers me. Small meals, lots of fluids, and remembering to take enough CREON have been key. I am watching the high glycemic index food like white rice and white bread, but then those digest easier when the diarrhea flare, so it's all a balancing act. its so comforting to hear from someone 5years out from diagnosis. Sometimes when I tell people I have pancreatic cancer they start crying. I guess because prognosis is known to be poor. It doesn't help!

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Since protein is important for healing and maintenance I wonder if there are protein drinks to supplement your diet? Years ago when I was on chemo for breast cancer I didn’t feel like eating meats- mostly breads, pasta and hot dogs! Nowadays there must be nutritionists that can advice- I hope.

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Susan, my husband had a Whipple February 7th, 2018. He has weird, rare tumors so his prognosis is still unknown and treatment is wait and see. He has diagnostic scans and labs every 3 months looking for markers or a tumor return. His Whipple was extensive, and reconstruction complicated. Since a Whipple was his only option, he had it done Robotically, 5 small incisions. 10 days in the hospital, 12 hour anesthesia and surgery. His recoup was about 4 to 6 months, but less traumatic than open belly surgery. He is carefully monitored by his Oncology team for recurrence and weight loss (30 pounds so far). He did Physical Therapy and dietician has him on a high protein/ high calorie diet with Creon
Since I don’t know where your tumor was located or the type of PC your biopsies and scans revealed, I thought if chemo and radiation could shrink the tumor, that a Whipple was a possibility. Of course, if your PC is metastatic, the new chemo is working to extend life expectancy far beyond older treatments. Don’t lose hope! Some Cancer Centers are better at dealing with Pancreatic Cancer because they utilize the newest treatments and surgery.
My husband was treated at Duke Cancer in Durham, NC.
You are in my prayers!
Moo1

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@astaingegerdm

Since protein is important for healing and maintenance I wonder if there are protein drinks to supplement your diet? Years ago when I was on chemo for breast cancer I didn’t feel like eating meats- mostly breads, pasta and hot dogs! Nowadays there must be nutritionists that can advice- I hope.

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@astaingegerdm Hello to you and @susandc some protein drinks are Boost and Ensure. We always used them at the hospital. There are also protein powders that can be mixed into everything. Can get these at a grocery store. Most people drink them ice cold and others like them frozen like ice cream. Enjoy!

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susandc and others, please read new treatments for Pancreatic Cancer on the National Cancer Institute’s website! Moo1

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