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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@minimia

Update – Planned a trip back to visit; last Thursday eve, (before the blizzard) On that morning, He collapsed and went to ER, diagnosed with blood infection/dehydration/jaundice/blood sugar out of whack, maybe due to blockage, back-up from stent, re-did ECP on late Friday, was lucky to get in, they think they cleared whatever was blocked; put on IV antibiotics, stayed at Mayo for 5 days, released with oral antibiotics, insulin, etc.. Mayo pharmacy was the worst – did not have correct scripts, had to page Dr; then Dr ordered insulin that was not covered – etc.. after waiting 2 hrs still had it messed up; Meanwhile patient released and waiting this whole time… Good News; PET scan was clear; so when they get all his stats under control he will do chemo 2 times a month for two months and then get scheduled for surgery to remove the tumor .

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@minimia, what an ordeal. I bet you and your father-in-law are exhausted. I encourage you to report your experience with the pharmacy to the Office of Patient Experience. See contact numbers here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience They will want to know about it and help improve the system.

Did you learn more about some of the causes of his collapse and poor stats? It would be good to understand what was going on so that he can take preventative measures to avoid it happening again (if possible). He'll want to be as healthy as possible for chemo. Did they give you a list of anticipated side effects and how to help manage them?

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@colleenyoung

@minimia, what an ordeal. I bet you and your father-in-law are exhausted. I encourage you to report your experience with the pharmacy to the Office of Patient Experience. See contact numbers here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience They will want to know about it and help improve the system.

Did you learn more about some of the causes of his collapse and poor stats? It would be good to understand what was going on so that he can take preventative measures to avoid it happening again (if possible). He'll want to be as healthy as possible for chemo. Did they give you a list of anticipated side effects and how to help manage them?

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Yes, I plan to provide feedback to the pharmacy; I also have the "hard copy" comment card, The PA actually called to apologize so that was good. Principal diagnosis was Cholangitis Acute ; many other Active problems – obstructive jaundice, malignant neoplasm of pancreas head, diabetes, etc.. Collapsed from Cholangitis and dehydration – we think; Stent was not functioning properly; He is feeling much better today at home; He will need to follow-up with primary care Dr on the 27th and then meet with Oncologist; he is nervous about the chemo and potential side effects so we hope to learn more from that visit.

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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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