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

@minimia

Agree, I feel like modern medicine is a joke… How can they not have an antibiotic or something like a blood transfusion, dialysis, etc.. to fix this… How come they sent home last time for I suspect this may have been the cause of the last collapse… I am not sure about comfort – he is at peace with it, its hard on the family, especially since they have been saying this was curable… Booked a flight for my husband

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Hello @minimia

I am so sorry to hear of this insurmountable infection. How very sad for your father-in-law and your entire family.

The comfort that Colleen, @colleenyoung, mentioned that is provided by Hospice and/or Palliative Care has to do with physical comfort for the one who is ill as well as emotional support for the family. I can personally attest to the helpfulness of hospice care that I experienced recently. They can provide with meds to ease the pain, nausea, and/or anxiety that your father-in-law might be experiencing now or in the next few weeks. I would encourage you to consider it.

You can always make a call and meet with a hospice intake person and then make a decision based on your interview.

Wishing you peace on this journey.

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Feeling hopeless and that the Medical system has failed to save a great man….. How can they send him home and not be able to cure a blood infection? Why did they not figure this out sooner?

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@hopeful33250

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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I am one week post op after having part of my pancreas removed and all of my spleen. After I heal I will start start some chemo/ I am just so happy to home in my own bed. They need to do something about the sucky beds at least at my hospital the entire stay I never slept more than a few hours total in each 24 hour day.

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@minimia

Feeling hopeless and that the Medical system has failed to save a great man….. How can they send him home and not be able to cure a blood infection? Why did they not figure this out sooner?

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@minimia How are you doing? Thinking of you and your family.

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Thanks for asking, here is the CRAZY thing, Mayo sent my father in law home to die of sepsis, since they stated they could do nothing more for him to stop the sepsis; we went for our last visit to see him, so we thought; He stopped all his meds; Insulin, antibiotics, pancreatic enzymes, etc… He was very weak, needed help in the shower, bathroom…. etc.. Last week he actually started to feel better, looks less jaundice, gets in and out of the shower etc… The family is trying to convince him to go back – perhaps to a different lab to get blood work done to see if the sepsis is actually gone, He says his body is wore out, he still has very little appetite… It's been hard on the family all these ups and downs…

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@minimia

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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@minimia – I have had the same kind of interaction with the pharmacy. I sat there for two hours after my surgery waiting for correct scripts. I have given feedback. Otherwise, Mayo people are so awesome! I went through chemo, radiation and then, surgery. Dr. Truty does PET scans also. Here are my story and video with inputs from Dr. Truty in the story and the video. Hang in there! One day at a time and stay positive. If you are caregiving, get your own self-care. Hugs, Rita https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

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Back in the "game"; After being sent home to hospice from septic shock due to contained gall bladder rupture 2/5 and receiving last rights, My father in laws health has improved at home back to his baseline – miracle? who knows but its great news and we are cautiously optimistic; other great news – he was able to meet and hold his new 1st great grandchild. He went back for re-evaluation at oncology clinic 3/17 had CT scan chest, abdomen, pelvis; blood work etc.. Glucose uncontrolled; due to thinking no hope… From what I can tell latest CT scan showed slight interval enlargement of pancreatic mass (34 by 25 mm) use to be (31 by 25 mm) ; All have agreed to start treatment again; discussed fact that steroids given during chemo could cause diabetic emergency so they will dose adjust FOLFIRNOX starting next week ; Plan is for neoadjuvant therapy followed by possible surgical resection if he improves symptomatically.. My inlaws are worried since he has been doing so well and wonder i they should rock the boat but want to try … also if he has a shot at being cancer free. Then we all have to worry about COVID… I hope you all are well… and please share your thoughts …

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@minimia

Back in the "game"; After being sent home to hospice from septic shock due to contained gall bladder rupture 2/5 and receiving last rights, My father in laws health has improved at home back to his baseline – miracle? who knows but its great news and we are cautiously optimistic; other great news – he was able to meet and hold his new 1st great grandchild. He went back for re-evaluation at oncology clinic 3/17 had CT scan chest, abdomen, pelvis; blood work etc.. Glucose uncontrolled; due to thinking no hope… From what I can tell latest CT scan showed slight interval enlargement of pancreatic mass (34 by 25 mm) use to be (31 by 25 mm) ; All have agreed to start treatment again; discussed fact that steroids given during chemo could cause diabetic emergency so they will dose adjust FOLFIRNOX starting next week ; Plan is for neoadjuvant therapy followed by possible surgical resection if he improves symptomatically.. My inlaws are worried since he has been doing so well and wonder i they should rock the boat but want to try … also if he has a shot at being cancer free. Then we all have to worry about COVID… I hope you all are well… and please share your thoughts …

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My goodness @minimia, that certainly not the outcome that your family was preparing for. Tremendous news. While the news is good and you are all being cautious optimistic, I'm sure you're also elated and exhausted. How are you doing? Is everyone able to catch their breath and get some rest for the next phase?

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