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

@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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Dear all my dad had an IRE a month ago , do you know when is the time to start chemo again ? He has pancreatic cancer

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@nasagia36

Dear all my dad had an IRE a month ago , do you know when is the time to start chemo again ? He has pancreatic cancer

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Hi @nasagia36, if I read your past messages correctly, your dad had chemo before surgery to help shrink the tumor, and then last month he had surgery, a Irreversible Electroporation (IRE). Your question is when will he start chemo post surgery, correct?

Has the medical oncologist not discussed the treatment plan with him? Might the start date be affected by COVID-19? What have you heard?

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@colleenyoung

Hi @nasagia36, if I read your past messages correctly, your dad had chemo before surgery to help shrink the tumor, and then last month he had surgery, a Irreversible Electroporation (IRE). Your question is when will he start chemo post surgery, correct?

Has the medical oncologist not discussed the treatment plan with him? Might the start date be affected by COVID-19? What have you heard?

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Hi , Actually he started today 6th week after IRE … yes this is what I believe too , probably they postponed the therapy due to Covid19 . The issue is that after IRE we were expecting improvement but this did not happen , CT scan show that the tumor increased ! Let’s hope that the new medicines will help him

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@nasagia36

Hi , Actually he started today 6th week after IRE … yes this is what I believe too , probably they postponed the therapy due to Covid19 . The issue is that after IRE we were expecting improvement but this did not happen , CT scan show that the tumor increased ! Let’s hope that the new medicines will help him

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@nasagia36, I'm sorry to hear that the tumor actually grew since the IRE. What chemo protocol did he start? How's he doing today?

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