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Anyone else with peritoneal mesothelioma here?
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.
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Hi @msfawn, Indeed peritoneal mesothelioma is a rare cancer that develops in the thin layer of tissue lining the abdomen. I'm tagging fellow members @galy and @banelson into this discussion as they have experience with peritoneal mesothelioma
Peritoneal mesothelioma is usually linked to toxic exposure to industrial pollutants, especially asbestos. Have you been exposed to asbestos? What treatments are you having or have you had? How are you doing?
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1 ReactionHi @msfawn ,
I'm so sorry that you're dealing with a peritoneal mesothelioma diagnosis. I have not personally been diagnosed with mesothelioma, but I carry a BAP1 mutation which puts me and my family at risk of mesothelioma along with some other cancers. Have you received any genetic testing?
I have a family member who has received care for peritoneal mesothelioma at Mayo Clinic's Rochester location and it was a very positive experience. Although mesothelioma is rare, Mayo Clinic sees quite a few mesothelioma cases, so the doctors are very knowledgeable.
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3 ReactionsI have it. I was diagnosed at 50. Now 54.
Welcome @myarmyherohusband. With such a rare cancer type as peritoneal mesothelioma, I'm confident that @msfawn will appreciate connecting with you and @banelson here.
@myarmyherohusband, how were you diagnosed? What treatments did you have or continue to have? How are you doing?
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1 ReactionHi @myarmyherohusband are you based in MN? Are you actively fighting it or where are you in your journey? Thanks for commenting and thanks @colleenyoung for spotlighting this comment for me.
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2 ReactionsI’m a MN native living in AZ now. I had a resection in 2020. Currently stable. Where are you in this journey?
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1 ReactionJust had another recheck CT scan yesterday.
9/9/23 Thank you for your peritoneal mesothelioma post. Last week the Mayo gave their second opinion on my biopsies, my diagnosis is Peritoneal Mesothelioma. My FIRST oncologist appointment will be in 4 days. I am a FEMALE living in MN, 63 years old. Several years of abdominal issues, epiploic appendagetis, omectal infarction, gall bladder removed (no stones no sludge) then thought I had a hernia, was admitted to the hospital for appendectomy, abdominal pics from both surgeries showing plentiful nodules on all muscle and organ surfaces - possibly stage IV ? Abbott and Mayo are working together on this one…
@pmesovh, how did the appointment go with the oncologist? Do you have a treatment plan?
Hello, I was diagnosed with Peritoneal Mesothelioma in Dec. of 2022 & turned active 73 woman. I do not qualify for Hipec since the amount of cancer & especially on my small intestine. I have been receiving chemo every 3 weeks & have seen some improvement. I am impressed with @myarmyherohusband & hope you are still doing well. I was wondering about your treatments & side effects you have endured and what does stable look like? I have been receiving 3 chemo drugs. CARPOPlatin is one of them. My last infusion I had an allergic reaction to it. I was wondering if anyone else has also had a reaction & did it change your treatment? Hugs to all