Anyone else with peritoneal mesothelioma here?

Thank you so much for welcoming me! Im NED (no evidence of disease) as of right now thankfully. I would suggest to find a doctor who has expertise in meso research right away. I am a patient at Mayo, but I also go to M.D. Anderson in Houston. I do scans every 3 months between the Mayo and M.D. Anderson. I also am in palliative care. It can feel pretty lonely going through all of this, and was hoping to reach others who are going through this and can understand the constant fear. Please feel free to ask me any questions you might have!

I’m 53 male and was diagnosed two months ago. I am being treated at Mayo, will receive my 3rd treatment of chemo next Monday.

@stutzmanle, much too young. I'm glad that you're at Mayo Clinic. How did your third chemo treatment go? What protocol are you on?

Hello
Yes I was diagnosed in 2020 i was 41, But I can't relate to your treatments I have yet needed treatments. Besides debulking. My case is rare i made 24th in country. So I am watched closely with scans . Best of luck to you!

Hello everyone!

My brother has been diagnosed with peritoneal mesothelioma a few weeks ago after biopsy was performed during laparoscopy. It is stage 4, as cancer has traveled to other organs (e.g. liver). He is 47 years old. We live in NYC.

He started chemotherapy at Mt.Sinai West hospital (carboplatin + some other one) and was suggested immunotherapy at the same time, although did not start yet. Surgery is not advised unless they can shrink the tumor, which is what they are trying to do with chemo + immunotherapy.

His biggest discomforts right now are ascites (water accumulation) as well as partial obstruction, so he has not been eating for weeks now and is on TPN. He had multiple paracentesis performed, but the water comes right back.

Has anyone experienced similar issues and has suggestions for approach to deal with all of this?

Please advise.

Thank you!

Hi @magnet80, I can imagine you're worried about your brother. You might find some helpful tips in this related discussion:
- Solutions for ascites (fluid build up in the abdomen). https://connect.mayoclinic.org/discussion/solutions-for-ascites-fluid-build-up-in-the-abdomen/

See all ascites-related discussions: https://connect.mayoclinic.org/search/discussions/

How is your brother doing on total parenteral nutrition (TPN)?

This thread of questions looks very old? I am looking for folks who want to talk about peritoneal mesothelioma.

@jackielovestowalk26 Welcome to Mayo Clinic Connect. Your diagnosis must have been a big shock to you. Most of us here were certainly shocked when we heard our own diagnoses. How are you doing? Have you started treatment?

This thread has posts as recently as a few months ago. So, many of the members who posted on this thread will receive notification of your new post and will respond.

Welcome, @jackielovestowalk26. I moved your post to this relevant discussion about peritoneal mesothelioma. I did this so that you can more easily connect with others like @stutzmanle @sherrygil @laurinm5 @magnet80, who have peritoneal mesothelioma.

Jackie, is this a new diagnosis for you? What is your treatment plan? How are you doing?

@colleenyoung thank you for doing that. I am exploring support and education regarding my disease. My diagnosis was in 2024 while participating in a specific clinical at NIH. My disease is connected to a BAP1 gene mutation. I have had debulking surgery w Hipec and shortly after I developed tumors in my stomach-now I am in chemotherapy treatments. So while I do feel I have good medical care, it’s a lot to understand as I navigate my life right now.