1. < Colorectal Cancer

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 8:46pm
In reply to @misty13 "Hello, I was diagnosed with Peritoneal Mesothelioma in Dec. of 2022 & turned active 73 woman...." + (show)
@misty13

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

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Hi @misty13, welcome. I know if they're able @banelson @msfawn @myarmyherohusband will join to share their experiences.

Did the allergic reaction to carboplatin start soon after the infusion was started? Will they adjust the protocol to manage the hypersensitivity to the drug?

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1 reply
banelson | @banelson | Mar 18 8:57pm

Hi @misty13 ,

I'm so sorry you're dealing with peritoneal mesothelioma. My family has a BAP1 mutation that puts us at a high risk for meso, so my comments will probably be quite different than some others. The mesotheliomas we get tend to be slower growing and less aggressive. One of my family members currently has peritoneal meso and is seen at Mayo and has had a great experience. For now, it's a watch and wait situation with regular scans.

Because my family has a mutation and meso is quite rare, I wanted to ask if you've had genetic testing? Something to consider as far as possible treatment options go and also informative for yourself and family members.

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msfawn | @msfawn | Mar 21 5:42pm
In reply to @colleenyoung "Hi @misty13, welcome. I know if they're able @banelson @msfawn @myarmyherohusband will join to share their..." + (show)
@colleenyoung

Hi @misty13, welcome. I know if they're able @banelson @msfawn @myarmyherohusband will join to share their experiences.

Did the allergic reaction to carboplatin start soon after the infusion was started? Will they adjust the protocol to manage the hypersensitivity to the drug?

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Hi @misty13, I too had Carboplatnin as part of my treatment, I don't think I had any allergic reactions though. I was diagnosed Dec 2021 and after a few surgeries (cytoreductive but not HIPEC) , a little chemo and mostly a lot of diet changes and added supplements I am No Evidence of Disease as of right now. At diagnosis I was full of meso all across my peritoneal. Feel free to private msg me if you want any tips to support and sustain your body through things. Hope you're doing your best to avoid all refined sugar, and trying to eat lots of brassicas, garlic and drinking green tea daily. You can so this!

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msfawn | @msfawn | Mar 21 6:09pm
In reply to @myarmyherohusband "I’m a MN native living in AZ now. I had a resection in 2020. Currently stable...." + (show)
@myarmyherohusband

I’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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I'm sorry I didn't see this earlier. Are you still stable? Just 10 years older than me and you being four years in and stable is encouraging. Thanks @myarmyherohusband for writing. Hope you are well. I am stable right now as far as I know

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