Help with ascites

We were told these catheters are well tolerated and should provide relief and help with both appetite and bowels. Spouse will be given it soon so we don’t have to schedule hospital trips every few days for another paracentesis (3 so far). He has also been given IV albumin to help replenish the protein lost in the ascites.

My husband recently developed ascites. Can anyone share their experience with this?

I am sorry he has developed ascites.

After a stage 2 diagnosis at Mayo, followed by 12 Folfirinox cycles, with checks at Mayo every two months showing some improvement, and then five weeks of radiation - all in advance of a scheduled Whipple surgery at Mayo, my sister, age 64, developed ascites. She had weakened progressively over this time.

Given ascites the surgeon said they could not operate, and that if able, she should return home for additional chemo, but she was hospitalized following the next session, then stayed in rehab for two weeks during which there was continuing metastasis to her peritoneum and possibly lungs, until she returned home for hospice care. She passed two months later.

Here is a reasonable, but specific, resource on pancreatic cancer and ascites. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10060830/#:~:text=In%20a%20study%20with%20180,instance%2C%20both%20Zervos%20et%20al.

Thank you for the information. I’m sorry for the loss of your sister to this terrible disease. Did she show signs of metastasis before the ascites?

At the last visit to Mayo there was some indication from scans of limited peritoneal nodules. She returned home and underwent five weeks of radiation. Her CA-19 was beginning to increase from her lowest active chemo level of 43.

About two weeks into the radiation, she began to show signs of ascites.

I travelled back and forth those times to Mayo, and assisted over the six months of chemo. I tried daily to convince her to relocate to Rochester, but she felt being with her cats at home was more important. My continuing belief is that anyone with this disease should relocate to be close to a center of excellence - the oncology care is better, the testing methodologies are better, and the staff is better. Rochester is a nice town, and various housing is available within walking distance of the center.

My husband isn’t showing signs of metastasis in scans but his CA 19-9 went up to 1200 recently from a low of 89 in June. The ascites surfaced a few weeks ago when he experienced an infection from a biliary stent pluggage from tumor debris.
We haven’t received cytology results yet from the paracentisis. I guess I’m wondering if ascites is always a sign of metastisis. The link you provided mentioned that cytology doesn’t always show metastasis and may need to be repeated several times.
You mentioned that your sister had radiation after getting ascites. Was the radiation palliative?

The radiation treatment was part of the process for the Mayo doctor to perform the Whipple.

I didn't mention it, but she had two paracentesis with cytology - the first shortly after the ascites was noted and it was negative. The second a month of so later was positive. Later, during the two weeks in a recovery facility, she was checked and found metastasis to lungs. Here's another link for review: https://jamanetwork.com/journals/jamaoncology/fullarticle/2757397

She had to be drained, sometimes daily as the ascites became more pronounced - this started after she crashed and was hospitalized from the attempted chemo restart. I probably have some of the chronology wrong - here is the link to her story. https://connect.mayoclinic.org/discussion/my-sisters-battle-with-pdac/

I'm sorry - this is still difficult. I try to review Connect to provide what little bit I know about this horrible disease.

I appreciate you sharing information to myself and others in this journey. I hope you find comfort in knowing you did so much to help your sister.
My husband is supposed to start Folfirinox in a couple of weeks, after being off of Gemcitabine/Abraxane for over a month since it appears to have stopped working. After reading what your sister went through when she restarted chemo now has me very worried for him. Unfortunately, restarting chemo is his only option other than palliative care.

@julia725 , Have you looked into clinical trial options? Although the Folfirinox chemo might work better than GA (for a while), it would be good to have the next "out-of-the-usual-SoC-box" step(s) planned. Has he had genetic testing done to identify mutations that might steer him to a specific trial/drug?

And FWIW, palliative care and active treatment are not mutually exclusive. It would be good to have a palliative team onboard already to help with symptom management; that (as opposed to Hospice) doesn't rule out trying to cure/manage the disease.

He had genetic testing and there were no gene mutations identified for clinical trials that would be more beneficial than the chemo plan but I agree with you that it should be revisited for next steps if/when chemo stops working. Thank you for pointing out the need for palliative care in conjunction with his current chemo plan. I will discuss this with the oncologist to have it on board when needed. I appreciate your comments and suggestions.