Anyone here been diagnosed with peritoneal carcinomatosis?

I was about 4 months post-Whipple when a recurrence was identified on MRI at the Whipple site, and over the next few months lesions in my peritoneum were declared to be peritoneal carcinomatosis assumed to be mets of the pancreatic tumor, which technically makes it Stage IV.

I didn't have much of a response to Folfirinox before the Whipple, but have had a better response (more so in CA19-9 reduction than on imaging, but also with fewer side effects) to 7 months of Gemcitabine + Abraxane + Cisplatin since then. (FWIW, I have an ATM mutation that may or may not make GAC a more appropriate treatment for me.)

Recent scans have resulted in a declaration of "stable disease" and opened up the possibility that I might qualify for HIPEC surgery, which is something you could ask your docs about. It seems to be an option for ovarian cancer patients as well as some pancreatic cancer patients.
https://connect.mayoclinic.org/discussion/hipec-1/
https://www.nejm.org/doi/full/10.1056/nejmoa1708618 regarding ovarian cancer reported,
"Our findings indicate that the addition of HIPEC to complete or optimal interval cytoreductive surgery resulted in longer median recurrence-free survival, by 3.5 months, and longer median overall survival, by 11.8 months, than surgery alone. "

"Inoperable" is kind of a relative term these days. In some cases it may mean there are anatomical impossibilities to overcome (like certain arterial involvement), and in others it may simply mean the surgeon won't proceed because it's hopeless in the presence of metastasis. I think both are possible to overcome -- the former with more skilled surgeons, and the latter with approaches like HIPEC.

Looking for a HIPEC team at this point would definitely delay any surgery (your planned one next week or a HIPEC) and may not be advisable, but again, is worth asking about if you can. They might be able to do something about your pancreas as well (maybe sooner, maybe later) if they open you up for HIPEC.

Either way, I hope you're in contact with a pancreatic cancer center of excellence about your case. If the Folfirini is not controlling your cancer(s) in fairly short order, you should ask about alternate therapies including clinical trials. It's possible to live a long time on certain therapies despite being Stage IV.

Wishing you the best!

Thank you for your response. It is my understanding that if my cancer is new ovarian cancer they might remove some of the lesions in the peritoneal lining, but if it is a metastasis from the pancreatic cancer they won't touch it. At this point I am looking for what will make my quality of life as good as possible in the time I have left. I have read about HIPEC surgery but my surgeon did not mention it. I doubt my insurance will cover it. I have had to fight for most of the treatment I have had up to this point. I just would like to know what to expect as far as pain and limits to physically ability. I have some ascites but have not had to have it drained. I am hoping the surgery will take care of it. There are days I am short of breath and can't eat. All in all though. 3 weeks out from my last chemo treatment I feel good.

@roseisarose , I wish I had more info to offer, but I'm just not as far into this journey yet as you are, so my experience is limited. I'm really only having side effects from the chemo so far, none from the cancer yet -- living on hope and denial I guess.

My dad's pleural mesothelioma came with pleural effusion and ascites that required drainage for a while, but it mostly dried up shortly after he started immunotherapy (Opdivo + Yervoy). So that aspect might be minor and manageable for you during your treatment.

At your surgery, how will they determine what's caused by the pancreas vs. the ovarian cancer? I would hope they take out everything they can, and that they save enough tissue to do tests like Signatera and maybe develop a targeted vaccine from.

If there's any indication your chemo isn't working, be ready to advocate for a change, if that is your preference at the time. Make sure you've had all the genetic tests to identify fusions and mutations that might steer you to more effective therapies.

If you haven't already, please keep looking into clinical trials. The BASECAMP+EVEREST trials look promising if you qualify for them.
https://classic.clinicaltrials.gov/ct2/show/NCT04981119
https://classic.clinicaltrials.gov/ct2/show/NCT05736731
I hope your surgery goes well, and that you come out of it with a serious appetite! 🙂

It is my understanding they might not know what cancer it is until after biopsy results come in. I don't know much about clinical trials. The few I checked into I was not a candidate. I hope I can continue with the fulfirini. I know how to deal with the side effects and am used to the routine. I had a chest X-Ray today and my lungs are clear. They were also clear on a recent CT scan. My liver is also good and the pancreas was stable. My hope the cancer is a metastasis and the chemo I am on can control it. I appreciate your time and care in answering me. I feel like I have been on a roller coaster of hope and disappointment since I was first diagnosed back in March of 2022. All in all though I have managed to stay active and enjoy life the best I can. Living in the moment, but still having something to accomplish when I get out of bed in the morning has kept me sane. I also use cannabis which helps tremendously with anxiety. Pain and appetite. Thank you for your best wishes.

Hi @roseisarose, I’m checking to see if you have an update. Did you get the results of the biopsy in the meantime? Are you dealing with metastasis or a new primary cancer?

I am still waiting on the results from pathology. I am doing very well in recovering from the surgery. I am using the time to sort through things physically and mentally. I have come to a resigned acceptance of what's likely in store but I have no concept of how long and don't really want to know. It is good to have a purpose. Thanks for checking on me.