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.

gamaryanne | @gamaryanne | Jan 28, 2023

In reply to @mayoconnectuser1 "Quick update - nothing good, unfortunately. Ascites has stabilized at one liter per day. Meeting with..." + (show)

I cannot add anything medically but I appreciate your detailed posting. We must be advocates for ourselves as the doctors have so many cases. I wonder now how hard it is for those that can’t be persistent due to illness. You are a blessing to your sister. Dont take her hope away if she wants to continue to fight. I’ve rarely met a doctor that gives me hope-just the raw story. Perhaps she has a diamond!
She will know when God is ready to call her home.

Colleen Young, Connect Director | @colleenyoung | Feb 10, 2023

In reply to @mayoconnectuser1 "More pretty awful information ... here's summary from last week's PET scan. Hard to read, and..." + (show)

@mayoconnectuser1

More pretty awful information ... here's summary from last week's PET scan. Hard to read, and a bit less specific than the advanced machinery at Mayo.

Oncologist most concerned about the pleural effusions mentioned; however she has scheduled Gem-Abraxane start on Thursday. But, she has scheduled a thoracentesis on Monday, prior to our appointment with her ... I am increasingly concerned the oncologist is doing what oncologists do and not understanding my sister needs a more direct input.

She is still draining 1 liter of peritoneal fluid per day.

She returned from a care facility on Wednesday, after 28 days. We arranged for 0800-1200 shift of caretakers, three times per week home health care, twice weekly PT and twice weekly OT. Vitas (palliative and hospice organization) has visited and assessed her, but she will not discuss hospice - only "getting better." Hospice cannot happen during chemotherapy since chemo is considered attempted cure. Bit of a Catch 23.

I am emoting too much, so I'll stop and let you read the PET summary.

"FINDINGS:
Neck:
There is physiologic activity in the neck.

Mediastinum:
Physiologic activity is seen in the mediastinum.

Lungs.
There is no hypermetabolic pulmonary nodule. There is a 9-mm pulmonary nodule within the anterior segment of the right upper lobe, but this may be too small for PET resolution. There is a moderate-sized right pleural effusion and moderate to large-sized left pleural effusion. There is associated passive atelectasis within both lungs.

Abdomen/pelvis:
Cirrhosis is evident. There is a metallic CBD stent in place extending across the pancreatic head, where no hypermetabolic lesion can be visualized. The pancreatic body and tail shows severe atrophy. There is a large volume of free fluid through the abdomen. There is nonspecific metabolic activity of the uterus which has a somewhat lobulated appearance, with a maximum SUV of 5.8; this may relate to the presence of fibroids. There is a 2.4-cm right adnexal hypodense lesion which could represent a necrotic fibroid. In the region of the left adnexa, what appears to represent an exophytic 3.5-cm fibroid could represent an independent left adnexal mass. There is a left-sided approach peritoneal drain extending to the right lower quadrant of the abdomen.

Osteoarticular Structures:
No concerning areas of hypermetabolic activity are seen among the osteoarticular structures. There is mild bilateral hip osteoarthritis. There is mild bilateral SI joint osteoarthritis. There are degenerative changes through the visualized spine and there are postoperative changes at the lumbar spine, with a posterior pedicle screw and bar fixation.

Additional Findings:
There is some mildly increased FDG activity along the right abdominal wall where a peritoneal drainage catheter was recently removed. There is mild edema of the body wall. There is nonspecific and nonmasslike, linearly distributed FDG activity over the anterior peritoneal cavity, with SUV max of 5.8.

IMPRESSION:
1. Cirrhosis and ascites.
2. Metallic CBD stent in place. No hypermetabolic activity is seen at the reported pancreatic malignancy.
3. Lobulated and hypermetabolic appearance of the uterus, perhaps related to the presence of fibroids. Please correlate clinically and perform ultrasound evaluation. It is difficult to exclude an independent left adnexal mass lesion.
4. Bandlike distribution of hypermetabolic activity along the anterior peritoneal cavity. This could be inflammatory, but metastatic omental disease cannot be excluded, although this may be inflammatory given the peritoneal drainage history.
5. Bilateral pleural effusions.
6. 9-mm pulmonary nodule within the anterior segment of the right upper lobe. No associated hypermetabolic activity detectable. This could be too small for this PET resolution.

Jump to this post

@mayoconnectuser1, how is your sister doing with respect to accepting her situation? Hope and denial often go hand in hand. I learned the phrase "reframe hope" from this article. It helped me understand hope (and denial) in the face of advanced cancer:
– Hope and Denial https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health/Hope+and+Denial.aspx

My hope is that you know that your sister's palliative and hospice team is also available for family members. Have you considered talking with an oncology or palliative social worker to lean on?

mayoconnectuser1 | @mayoconnectuser1 | Feb 10, 2023

Today - bear hugged sister to a standing position to get her into wheelchair - bear hugged her out of wheelchair to get her into car - same out of car, into chair, our of chair on leaving - to go see her oncologist who she was determined to impress so she would authorize continued chemo.

Heartbreaking discussion with oncologist - she noted my sister's condition was not suitable for additional chemo, but would draw blood tomorrow to make sure there was nothing missed. She asked how much time was being spent in bed - my sister was evasive, so I reluctantly provided the answer - maybe 90-95%. The oncologist was looking for a number - as doctors do. In this case the number was 75% or more in bed constituted grounds for not continuing.

The oncologist was so very kind - she put her arm around her and said there was nothing you have done wrong - you are fighting hard and we know that - your body is simply was not allowing it. That, based on scans and thoracentesis, that although there may no longer be cancer in the pancreas there was cancer in many other places. My sister asked how much time and she answered, given the decline in the last two weeks, perhaps about that same amount of time, but that it was very difficult to know. Further discussion related to how would it end. Since hospice was already engaged, the doctor said with more and more sleep, but it would be pain free.

More later.

Colleen Young, Connect Director | @colleenyoung | Feb 10, 2023

In reply to @mayoconnectuser1 "Today - bear hugged sister to a standing position to get her into wheelchair - bear..." + (show)

This must've been so hard for you and your sister to hear. While it may not seem like it, these conversations are hard for doctors too. Your sister is a fighter and I hope that she can take solace in that she did everything in her power. Please give her a bear hug just because. They are important too.

I'm sending a virtual bear hug to you @mayoconnectuser1.

mayoconnectuser1 | @mayoconnectuser1 | Mar 5, 2023

In the last three weeks my sister has gone from occasionally walking to bathroom with walker, to not walking at all.

When you see someone all day, every day, you look for change ... but it's difficult to sense major change.

She was draining 1L/day of peritoneal fluid six weeks ago - this has decreased to near zero. My sense, without medical knowledge - haven't found anything related on line - is this related to decreasing liver function.

Today was a major change day - she was unable to remain standing - I had to hold her up after lifting her up. She is also breathing differently, and perhaps beginning to disconnect from time, as well. Calling out names of people we don't know. Desperately wanting to stay awake, but not able to.

I am saddened to write this - hopefully someone will benefit.

gardenlady1116 | @gardenlady1116 | Mar 6, 2023

I am sorry to hear this. I am sure that it is a blessing to have loving family near by. I will need to move away from my home if I want to be with my family at the end of my life. I feel certain that there is great comfort to your sister to have you nearby. It is helpful to me to hear your story. I know that could be me.

susanpmadigan | @susanpmadigan | Mar 7, 2023

It is so sad and upsetting to see someone that we love have to face the end of life. We all face death. However your sister is not in pain thank goodness due to the wonderful drugs we have now. My mom was in the same situation the last few weeks of her life. Your sister is calling out names. Anyone who has passed? My mom tried to talk and tell me something the last few days but could not speak. So we held hands and looked at one another with love. That's what we do !!! Please stay strong. Yes it's hard for those who are left behind but this is the cycle of life
Sincerely Susan

mayoconnectuser1 | @mayoconnectuser1 | Mar 8, 2023

Quick update - again, so it might provide some basis of understanding of progression to others.

Beginning around midnight on Monday, she woke up crying and moaning loudly in pain. This is first of this sort of occurrence, but we knew it was coming.

I had been giving her (per hospice) tramadol as needed - not to exceed 4-6 hour intervals. This had been 1-2 a day - morning and early evening - this had been sufficient. Until Monday night. We tried another tramadol at midnight, then at 4 am, but by 7 am she was more vocal and clearly in a different sort of pain.

So, after she and I discussed, she agreed that it was time for the liquid morphine. I administered 0.25 ml - a tiny amount. She calmed in about 15 minutes and slept for 10 hours. When she woke, she was OK for a little while, but pain started again, so another 0.25 ml. Again, calming in 15-20 minutes.

She has shown no interest in food in two days and is now drinking very little.

She woke this morning at 5 am in significant pain - so, the med cycle continues.

gardenlady1116 | @gardenlady1116 | Mar 9, 2023

Thank you for sharing your story. Thoughts and prayers for your family in such a difficult time.

ihatesnowinindiana | @ihatesnowinindiana | Mar 9, 2023

In reply to @mayoconnectuser1 "Quick update - again, so it might provide some basis of understanding of progression to others...." + (show)

Honestly surprised they gave her tramadol, didn't feel any relief from any of my pain when I was on it for just basic pain, let alone cancer.

View More View Less

Please sign in or register to post a reply.