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

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

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.

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.

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.