Recent diagnosis of pancreatic cancerous tumor - awaiting PET

Posted by minimia @minimia, Jan 9, 2020

My 70 yr old father in law became ill around thanksgiving with chronic diarrhea; thought it was the flu, started to loose lots of weight, tired, became jaundice; finally got appt at GP and they did MRI that showed "tumor" in pancreas; GP referred to Mayo took a few weeks to get appt over Holidays; loosing more weight; sleeping all the time; more jaundice; gets consult, take him off blood thinners; then put stent in to open duct to liver to liver; find cancerous tumor; xray chest - looks clear; schedule for PET next week to see if cancer has spread anywhere; if all clear then he has to gain weight, have chemo to shrink tumor, and then surgery to remove. Any insights on how family can support him through this process and what to ask Dr's and look out for. Thanks in advance

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Update - Went in for chemo port placement, sent home first time because had not gone off blood thinners. Anyway, went to Mayo Rochester and had port put in and first round of chemo cocktail; Dr wanted three chemo drugs (Fluorouracil, Oxaliplatin, Irinotecan) however since bilirubin number was still a bit high they did not give him the Fluorouracil. Was sent home with pump to pump more chemo for 48 hrs. Has not had any bad reactions to chemo so far - its has only been 24 hrs. He will do this for 2 times per month for 2-3 months in hopes to shrink tumor and kill any cancer cells prior to surgery. Not sure if I mentioned he is a type 2 diabetic, so struggling a bit with blood sugar control versus eating for strength. He does not have much of an appetite. Any suggestions on how to get through the chemo and what to eat... ? Thanks

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Ensure or Boost Plus drinks saved us in this regard - high calorie/nutrient content in one small container.

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@kimber361

@minimia, With having any stent placements, just know sometimes they can migrate on their own causing biliary ductal system blockages, which can cause a pancreatitis attack. Pancreatitis attacks can be very painfil & if not treated promptly, it can be fatal. Watch him closely for signs of jaundice, mid upper abdominal pain that radiates into the mid back & sometimes into the shoulder(s), nausea/vomiting, fever, diarrhea & somtimes loss of bowel control. If he has any of these symptoms, seek immediate medical attention at a University Medical Center (teaching hospital), Mayo Clinic Hospitals or Johns Hopkins Medical Center. All other community hospitals do not have the specialists nor the medical equipment for treating these types of patients.

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Thanks for the information; He has stabilized from the second stent procedure/ blood infection and has now started the Chemo process for 2-3 months before they will perform the pancreaticoduodenectomy which I believe is synonym for the whipple

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@kimber361

@minimia, Things to do after having the Whipple Procedure surgery: 1) Ask his surgeon to order oral prescription pancreatic enzymes (since the exocrine/head of the pancreas that naturally produces enzymes has been removed) such as Creon or Zenpep for him to take during his meals/snacks; 2) Make sure the nursing staff during "each work shift", suctions his nasogastric tube to help prevent acid build up in his stomach muscle, which will cause nausea/vomiting; 2) Make sure he walks, walks, walks as this will help his digestive system restart & keep his lungs from being filled with fluid, as this could pose a whole other set of serious problems; 3) Don't be afraid to ask the surgeon & nursing staff questions about anything...there's no dumb question when it comes to your loved ones; 4) Encourage him to eat at least a few bites of food as often as possible even if he's on a feeding tube. My go-to foods were mashed potatoes, scrambled eggs, creamy soups, dry toast, pudding cups & applesauce. It's going to be a matter of trying old favorite foods to new foods to see what his "new" digestive system will tolerate. Keep a food log with date, time, type of food, the amount ingested & the outcome.

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Thanks - we will have to refer back to this when we get closer to the surgical procedure.

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@minimia

Update - Went in for chemo port placement, sent home first time because had not gone off blood thinners. Anyway, went to Mayo Rochester and had port put in and first round of chemo cocktail; Dr wanted three chemo drugs (Fluorouracil, Oxaliplatin, Irinotecan) however since bilirubin number was still a bit high they did not give him the Fluorouracil. Was sent home with pump to pump more chemo for 48 hrs. Has not had any bad reactions to chemo so far - its has only been 24 hrs. He will do this for 2 times per month for 2-3 months in hopes to shrink tumor and kill any cancer cells prior to surgery. Not sure if I mentioned he is a type 2 diabetic, so struggling a bit with blood sugar control versus eating for strength. He does not have much of an appetite. Any suggestions on how to get through the chemo and what to eat... ? Thanks

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@minimia, I'm not an oncologist or nurse, so I'm only sharing my dad's experience. Some of these chemo drugs (oxaliplatin) can cause peripheral neuropathy (numbness or loss of feeling in the extremities, like feet and finger tips). This can also be a side effect of type 2 diabetes, so his cancer team will ask about the feeling in his hands and feet before every treatment. The side effects are cumulative. My dad had to be careful to use a glove when holding a glass of ice water. He liked to drink really cold water. And he always wore good soled slippers or sneakers even around the house for better stability.

The drugs do affect sugar levels too. You can ask to have a consult with a diabetes educator who specializes in cancer. She/he could provide counsel on what the "new normal" is for his sugar levels while on chemo. An oncology nutritionist can also help with recommendations for eating. Did you know that these services exist? Are you still in Rochester?

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Before each of my chemo treatments I was given steroids. Steroids increase your blood sugars. After my chemo was done, they "forgot" to tell me to watch how much insulin I was taking. Without the steroids, my blood sugars went back down but my insulin had not been adjusted. I had some severe lows because I was taking too much insulin.

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Well things seem to just get worse before they get better ; Is this the new normal? Father in law had first round of chemo last Thursday and then on Sunday wound up in ICU, Dehydration, blood infection , LOW blood pressure, heart in AFIB, they think metal stent may have pierced has gall bladder; he is losing hope; they want to re-do the ERCP AGAIN - 3rd time .. I have to ask , Why don't they just do the surgery.... (whipple) all these other procedures seems to be making everything worse ….

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I had one half of my pancreas removed 9 years ago. And one lobe of my liver.
I also had an embolism when the pancreatic duct did not close. The biggest concern.
I highly suggest not getting chemo .
It weakens one.
Im a type 2 diabetic. I inject insulin .
And its OK.
im ok.
Im also on lanreotide ever 28 days.
Ive been in remission 9 years.
Im 62 now.
I also had alot of abdominal plastic surgery after my whipple.
I am very active.
Make sure u go to a tertiary hospital.
And make sure they have a tumor board.
Get the best surgeon with the most experience.
By prepared to go back to the ER at a moments notice after because of complications. I.e. infections.
Stay Strong.

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Thank you for the information and support. When asked about just cutting out the tumor, the Dr State, if he does not have chemo, the cancer will spread out of the tumor. They are now saying the latest issue was they think the stent moved somehow punctured the gall bladder so had to do surgery on that and he has a bag draining the infection. He is at Rochester Mayo so supposedly they have the best surgeons for this.

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@minimia

Thank you for the information and support. When asked about just cutting out the tumor, the Dr State, if he does not have chemo, the cancer will spread out of the tumor. They are now saying the latest issue was they think the stent moved somehow punctured the gall bladder so had to do surgery on that and he has a bag draining the infection. He is at Rochester Mayo so supposedly they have the best surgeons for this.

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Hello @minimia
I appreciate the update. It sounds like your father-in-law has been through a lot of procedures.

How is he doing with all of this? How about your family? Do you have enough support from friends to help you all?

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