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

Hi @minimia, Have him drink Boost Very High Calorie drinks during chemo & before his surgery. It should help him at least maintain his weight.

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@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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@minimia, The questions you should ask any potential surgeon are:
1) How many Whipple Procedure surgeries, Distal Pancreatectomies & Total Pancreatectomies do you perform annually? (If it's less than 10, run! Obtain another surgical consult asap!)
2) Do you operate in a large volume hospital who has the capabilities of caring for Whipple patients? (If not, run! And, obtain another surgical consult.)
3) Do you perform laproscopic, robotic or open abdominal Whipple Procedure surgeries? (Just know, if at all possible opt for laproscopic or robotic surgery, as there will be less recovery time.
4) Do you use a Chevron (horizontal) or vertical incision for open abdominal surgeries & do you use surgical glue for the exterior incision? (I had a Chevron & a 13 inch abdominal scar. My surgeon used surgical glue on my incision. I have several friends who underwent the Whipple Procedure surgery & they had a vertical incisions w/metal staples & they all had to have an additional surgery to repair hernias.)
4) Request during pre-op after IV is placed, that an epidural be placed to help control pain;
5) Request a pain pump to utilized to help with pain control.

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@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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@colleenyoung

@marciakaye, based on your post, I looked into genetic testing and pancreatic cancer and found this article from Pancreatic Cancer Action Network
– New Study Encourages Genetic Testing for All Pancreatic Cancer Patients, Regardless of Family History https://www.pancan.org/news/new-study-encourages-genetic-testing-for-all-pancreatic-cancer-patients-regardless-of-family-history/

How might genetic testing have changed the treatment options for you? What do you wish you had known?

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I was only recently diagnosed but. The doctor wanted me to talk to a genetics counselor. I filled out a questionnaire on family history etc. The lady called me yesterday and we went over everything. So when I go in for surgery they are going to draw blood for the genetics testing. There is no history of pancreatic cancer in my family (as far as I know) And only very few family members who have ever had cancer. . Should be interesting to see what it shows. She said it takes about three weeks to get the results.

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@cathyras

I was only recently diagnosed but. The doctor wanted me to talk to a genetics counselor. I filled out a questionnaire on family history etc. The lady called me yesterday and we went over everything. So when I go in for surgery they are going to draw blood for the genetics testing. There is no history of pancreatic cancer in my family (as far as I know) And only very few family members who have ever had cancer. . Should be interesting to see what it shows. She said it takes about three weeks to get the results.

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Hi!
You are not alone. My friend Gary has a pre cancerous cyst on the head of
the pancreas. The drs. want him to have the Whipple procedure done. We are
getting a second opinion and will go foward after that. Modern medicine is
magical so take care of yourself…do your research and then you won't be
so scared.

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thank you. I have done a lot of research. My first place honestly was mayo Clinic. Staying positive and soon will have that cancer cut out of me.

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@kimber361

Hi @minimia, Have him drink Boost Very High Calorie drinks during chemo & before his surgery. It should help him at least maintain his weight.

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Does this work for type 2 diabetic?

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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.

Jump to this post

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

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