Whipple procedure and follow up chemo

Posted by dakotarunner @dakotarunner, Thu, Apr 4 8:20pm

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

@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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@becsbuddy

@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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Thanks for the advice. I have a chocolate protein powder that just tastes kind of gritty, never thought to freeze it, that would surely make it more palatable. I've tried mixing it with soy milk.

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@moo1

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

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Here is the link to the National Cancer Institutes webpage that @moo1 refers to:
– Advances in Pancreatic Cancer Research https://www.cancer.gov/types/pancreatic/research

Dr. Mark Truty, a cancer surgeon at Mayo Clinic, is a leading research in pancreatic cancer. Here is a brief video about his approach.

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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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Hi Susan,
Creon takes a long time to figure out! I also take one at night before bed and it seems to help, but everyone is different. I recently started eating plant based cheeses so no dairy in them. Try a few of them to see if you like them. Try sweet potatoes and other potatoes as well. I roast garlic and will mash it with the potatoes – it’s good! I have an instant pot and also make a vegetarian chili with beans, mushrooms, sweet potatoes and quinoa. Try making quinoa and lentils on their own or with cooked vegetables. If you can handle avocado try a quarter of one at a time. Remember if something doesn’t sound or look good don’t eat it! Oh, and if can handle nuts – walnuts, cashews and hazelnuts are all good too!

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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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You can also make your own protein shakes as it’s summer and berries are plentiful! Buy some organic protein powder, add almond milk, strawberries, blueberries and bananas! You can add additional calories by adding things such as flaxseed, chai seeds, hemp hearts, and coco powder!

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Colleen, thanks for forwarding the NIC website! Moo1

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@dianamiracle

Hi Susan,
Creon takes a long time to figure out! I also take one at night before bed and it seems to help, but everyone is different. I recently started eating plant based cheeses so no dairy in them. Try a few of them to see if you like them. Try sweet potatoes and other potatoes as well. I roast garlic and will mash it with the potatoes – it’s good! I have an instant pot and also make a vegetarian chili with beans, mushrooms, sweet potatoes and quinoa. Try making quinoa and lentils on their own or with cooked vegetables. If you can handle avocado try a quarter of one at a time. Remember if something doesn’t sound or look good don’t eat it! Oh, and if can handle nuts – walnuts, cashews and hazelnuts are all good too!

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Thanks for these reminders. (Your post made me hungry). Most people don't appreciate how much protein we can get from veggies and legumes. Nutrition information I have sought out has been disappointing as it does not take into consideration the digestive issues associated with pancreatic cancer. That includes the oncology specialized nutritionist I visited with early in the game. So much nutrition info widely available is also 100% contradictory…frustrating.

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Please tell me u r symptoms for pancreatic cancer i have and have been having pains upper right quadrant that extends into my back and across my back like something is pressing on the nerves

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@cookiegnias

Please tell me u r symptoms for pancreatic cancer i have and have been having pains upper right quadrant that extends into my back and across my back like something is pressing on the nerves

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Cookiegnias, I had this upper right quadrant belly pain and it was worse when lying down, and unrelated to eating. I also had changes in digestion. I had abdominal ultrasound, colonoscopy and stomach scope but all were normal. Physician was ready to stop testing (I believe stomach pain and digestive issues are easy to dismiss) but I insisted something was not right and we finally did CT scan which detected the tumor. Time of onset of symptoms to identification of the cancer was 5 months. We need to be our own advocates in the health care world.

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