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.

I am moved by your sister's courage

REPLY

Hi @mayoconnectuser1, like @gardenlady1116, I'm moved by your sister's determination. I'm tagging @asugent because I think she will want to read this update.

I'm also tagging @julie2018 @jessieleigh and @beachdog who have experience in managing ascites fluid. Have you been able to discuss the extent of liver damage with the cancer team?

REPLY

Update – while at the care facility, the pleurx drain on her right side stopped draining, so she had appointment with Interventional Radiology at hospital. Determination made there was no fluid in the right side of her abdomen, so they removed that drain. There was fluid in the right side, so they installed a drain on the right side and removed 3.1 liters

She is back in the care facility and resting comfortably. She has had no significant pain through this awful time, other than discomfort from the ascites. Since October there has been around 30 liters of drainage.

The last CT (December 22, 2023) noted the following – "Abdomen and pelvis:
Hepatobiliary: The liver appears small. Is intrahepatic pneumobilia. There is a CBD stent in place. The gallbladder is nondistended. There is mucosal enhancement of the gallbladder. There is limited visualization of the pancreatic head because of the presence of the stent, and because of beam hardening artifact from spinal fixation hardware but subtle hypodensity at the pancreatic head/uncinate process may represent a mass lesion. There is otherwise pancreatic atrophy. There is a moderate volume of ascites. There is extensive mesenteric edema. There is a right abdominal peritoneal drainage catheter in place."

Things I can no longer categorize based on my limited knowledge:
– I don't understand the "small liver" comment.
– I don't understand ascites no longer being present on the right side (this is the liver side).
– I don't understand ascites now only on the left side.

REPLY

I can recommend going over the report in detail with the doctor. I did this with a CT Abdomen with my doctor and we went thru all the findings mentioned in the report, line by line. This visit was by telehealth. I had to work my way through the nurse practitioner, who clearly couldn't answer my questions, but as the ordering provider, she got the result. I questioned the findings in the report and insisted that the radiologist should be giving more information. More information was given, however my questions were still not answered. Eventually I did get to the doctor and got the information I was looking for. The provider who ordered the CT should be answering your questions in detail. Patience and persistence is needed I find. I am not good with patience, OK with persistence when it comes to getting answers.

REPLY

I've gotten pretty adept at reading CT reports over the last year with multiple visits to Mayo, and those done at our local hospital. I'll pose my questions to the oncologist when we next meet.

My sister is already swollen with ascites fluid – I'm hoping she can be drained tomorrow as it relieves some discomfort.

She has not noted that she is "in pain," which is good news, but this doesn't follow the progression of which I have read.

She is at about 11.5-12 months from initial diagnosis/concern.

REPLY
@mayoconnectuser1

I've gotten pretty adept at reading CT reports over the last year with multiple visits to Mayo, and those done at our local hospital. I'll pose my questions to the oncologist when we next meet.

My sister is already swollen with ascites fluid – I'm hoping she can be drained tomorrow as it relieves some discomfort.

She has not noted that she is "in pain," which is good news, but this doesn't follow the progression of which I have read.

She is at about 11.5-12 months from initial diagnosis/concern.

Jump to this post

How is your sister doing, @mayoconnectuser1? Any update?

REPLY

I was just preparing to post …

The lessening of ascites turned out not to be true … it started back, again … 10 liters drained in the last nine days of this writing. By my count, 35-40 liters since October.

Still in care facility, but believes her condition is improving. I think she is having good days, but is declining. She may be avoiding an office call with her oncologist – we think to avoid being told they cannot restart chemo, even with the milder gem-abraxane mix.

She now wants to go home on 25 January … we're going to be working on staffing, but have convinced her to meet with oncologist for advice.

REPLY

Quick update – nothing good, unfortunately.

Ascites has stabilized at one liter per day.

Meeting with her oncologist this morning was quietly disheartening – my sister still feels she is improving, the doctor recognizes this as denial, as I do. The net of the discussion was that my sister can leave the care facility if she wants to (we can afford it), but that she should prepare to be less mobile, and sleeping more, with help likely needed for bathroom needs and meal delivery. She then noted if there is progression, then it may be time to "get affairs in order." I believe this last phrase may finally have made an impression.

The doctor ordered another PET scan.

She then had blood drawn for the usual assessment – again, nothing good. This will allow the oncologist to be more direct, I believe, but will need to wait to see – I have a note in on the hospital server for her.

A few blood chemistry points (mainly added to urge those of you in caregiver/advocate roles to do your homework) – not sure, even with sufficient WBC of 6.7 whether this allows starting of Gem-Abraxane.

Kidney function:
BUN 36
ALT 8
eGFR 32

Cancer markers:
CA 125 – 93.8
CA 19-9 8042

REPLY
@mayoconnectuser1

Quick update – nothing good, unfortunately.

Ascites has stabilized at one liter per day.

Meeting with her oncologist this morning was quietly disheartening – my sister still feels she is improving, the doctor recognizes this as denial, as I do. The net of the discussion was that my sister can leave the care facility if she wants to (we can afford it), but that she should prepare to be less mobile, and sleeping more, with help likely needed for bathroom needs and meal delivery. She then noted if there is progression, then it may be time to "get affairs in order." I believe this last phrase may finally have made an impression.

The doctor ordered another PET scan.

She then had blood drawn for the usual assessment – again, nothing good. This will allow the oncologist to be more direct, I believe, but will need to wait to see – I have a note in on the hospital server for her.

A few blood chemistry points (mainly added to urge those of you in caregiver/advocate roles to do your homework) – not sure, even with sufficient WBC of 6.7 whether this allows starting of Gem-Abraxane.

Kidney function:
BUN 36
ALT 8
eGFR 32

Cancer markers:
CA 125 – 93.8
CA 19-9 8042

Jump to this post

Thank you for the updates. I find it very helpful to hear your story. Thoughts and prayers to you and your loved one

REPLY

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.

REPLY
Please sign in or register to post a reply.