1. < Pancreatic Cancer

My Sister's Battle with pancreatic ductal adenocarcinoma (PDAC)

Posted by mayoconnectuser1 @mayoconnectuser1, Dec 31, 2022

Well, we are now at about 10 months from the time she became jaundiced.

We got to Mayo within ten days or so, had full workup and the assessment was that it was borderline resectable. So, back home for eight two-week cycles of folfirinox followed by chemo enhanced radiation therapy. Between each set of four chemo cycles we returned to Mayo for assessment - the tumor had shrunk to where it was not really visible, and her CA 19-9 marker tests had improved, but were not normal. Following the chemo-radiation, she had a month off (normal planning) - during this time she developed ascites, but we returned on time for the planned surgery - dreading the answer. It was as expected - CT and PET/MRI showed spread to liver, hepatic arteries and omentum had nodularity.

The ascites had become significant with paracentesis every ten days or so - 6-7 liters. A Pleurx drain was installed and she began at home drainage with assistance of home health nurse, sometimes as much as two liters ever other day.

At the same time she returned to folfirinox treatment and made it through two cycles before becoming ill - very low white cell counts (400!) - and, she was hospitalized for 7 days, then discharged to a local care facility. She was given Neupogen to increase white cell output and it worked - from 400 to 8000 in five days. Other blood work numbers were not so good. During the two cycles she continued to drain off 1-2 liters every other day, then about the same in the hospital. The last two days in the hospital the quantity of ascites fluid slowed significantly - and, when she discharged to the care facility the rate of discharge was limited.

Her intent is to improve her condition in the rehab facility and restart chemo to buy time, but is switching to Gemcitabine-Abraxane due to milder side effects.

I don't know if she will make it to more chemo - so very sad.

One confusing factor is the lessening of ascites fluid - I can't find anything discussing this - has anyone seen a reference to this effect? I am concerned it is reflective of a significantly damaged liver, but really don't understand.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

mdbray | @mdbray | Mar 26, 2023

I just read that your sister passed. I am so sorry.

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mamarina | @mamarina | Mar 27, 2023
In reply to @mdbray "I appreciate your updates as I have chosen not to have anymore treatments. I asked the..." + (show)
@mdbray

I appreciate your updates as I have chosen not to have anymore treatments. I asked the surgeon how long I had and he said 6 to 8 months--that was Dec. 1st. He said chemo would only add about 4 months, but that there was always hope. He said to go out and do everything I wanted to do. The chemo made me so sick that it's not worth it to for 4 months. Today is 3/26/23 and I walked my dog and pulled dandelions and called a friend who has pancreatic cancer and had the Whipple nine years ago. There are now some nodules in his lungs.
I know that my time is coming. The symptoms I have are some anxiety for which I take lorazepam and a little discomfort on my right side--no pain. I also take a Creon with meals and pray a lot and hope that I will be a miracle.
Of interest is that five years ago I didn't feel good and went to ER and they did an ultrasound and MRI. All was okay, however, I recently looked at the results of those tests and it said that my pancreas had many cysts, probably benign! Well one wasn't! I don't know what could have been done and this is my fate.
Please keep updating. At least, I can see what is ahead for me. I was diagnosed on January 31, 2022. A week later I had a gallbladder attack and had my gallbladder removed. I had chemo and SRBT radiation in preparation for the Whipple. The PET scans and CT scans didn't show the carcinomatosis until the surgeon went in and saw it. I had robotic surgery and healed quickly. The doctor did not perform the Whipple, but took 6 inches of my intestine and created a bypass over my pancreas so I could digest food.
On most days I feel normal. I pray that God will give me more time.

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Mbray
I am saddened to hear your story.. mine may end up same , had PET scan last week which had some uptake still @ pancreas / duodenum and my stent. have endoscopy to see whats really going on and biopsy of a lymph node that lit up as well .. coming up. I was not a good whipple candidate
I did some chemo and sbrt
I was diagnosed a year ago.

Its a strange place to be mentally. Especially when I have loved ones that need me around. As Im sure you do as well
My prayers for you and that miracles can happen . May your days be filled with simple joys. Like walking your dog and picking dandelions.. keep thinking positive thoughts as difficult as that may be
Sending a hug 🙏🏻❤️

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gardenlady1116 | @gardenlady1116 | Mar 27, 2023

Thank you for sharing your story, I learn so much from every story. Hoping you will enjoy every day of the time God gives you with many more walks with your dog and dandelions to pull. It is surprising to me how many small blessings I seem to find these days.

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mamarina | @mamarina | Mar 27, 2023
In reply to @mayoconnectuser1 "Hi All, Well, after several tough days, my sister passed peacefully early this morning. She was..." + (show)
@mayoconnectuser1

Hi All,

Well, after several tough days, my sister passed peacefully early this morning.

She was under hospice care, and they had provided liquid morphine, which was very helpful in calming her, easing her breathing and dealing with pain.

This was an ordeal - and, frankly I can't think of anything we could have done differently that would have affected the outcome.

One uneducated conclusion on my part, not the only one, obviously - is that given the aggressiveness of pancreatic cancer, and it's broad and almost extraordinary likelihood of metastasis, a more sensitive and reliable blood screening tool is needed - not for when someone is considered for diagnosis, but every year during physicals. Even if this was perfect some would still not be helped because of the one year cycle - but, it would be a start. It must be caught early.

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I am so sorry for your loss
There really are no words
May she rest in peace💜

REPLY
amy | @asugent | Mar 28, 2023

I’m so sorry for your loss. May your sister rest in peace.

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