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Anyone else with peritoneal mesothelioma here?

Posted by msfawn @msfawn, Nov 20, 2022

I hear my diagnosis is literally one in a million. Weird to be 43 and have been totally fit & healthy and never really have a doctor then bam, world up side down, loss of everything I value in life and know so few souls experiencing this. I am connected to MARF, just wondering if there are any fellow patients at Mayo who can relate.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

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sherrygil | @sherrygil | Jul 17, 2024
In reply to @colleenyoung "Hi @sherrygil, I'm tagging @misty13 @msfawn @myarmyherohusband to make sure they saw your posts and will..." + (show)
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Hi @sherrygil, I'm tagging @misty13 @msfawn @myarmyherohusband to make sure they saw your posts and will join me in welcoming you to the group.

I'm glad that HIPEC surgery in 2019 and again in 2021 has stablized the peritoneal mesothelioma.

How are you doing now? What advice would you offer someone newly diagnosed with peritoneal mesothelioma?

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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!

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stutzmanle | @stutzmanle | Dec 4, 2024

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.

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Colleen Young, Connect Director | @colleenyoung | Dec 15, 2024
In reply to @stutzmanle "I’m 53 male and was diagnosed two months ago. I am being treated at Mayo, will..." + (show)
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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.

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@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?

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laurinm5 | @laurinm5 | Apr 24 9:56pm

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!

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magnet80 | @magnet80 | Dec 7 2:39pm

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!

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