Anyone else with peritoneal mesothelioma here?

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?

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.

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!

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

Diagnosed with peritoneal mesothelioma in August 2019 and had my first HIPEC surgery at the Mayo/Phoenix campus in Arizona. I am also followed by MDAnderson Houston and had my second HIPEC there in Sept. 2021. Just wanting to connect with others that have the same cancer since it is so rare.

I was very healthy as you were. Had a hysterectomy in Sept of 2019 and they found meso on my ovaries. I have had two HIPECS. The first one at the Mayo and the second one at MDANDERSON in Houston in Sept of 2021. Would love to connect with someone who has this to talk about symptoms and such.
Thanks !
Sherry Gilhart

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?

Hi Sherry,
I'm open to exchanging contact information and talking off the site sometime if you wish. I have one other friend I connect with who has peri meso and it's so nice to talk with someone who gets it and is walking the same road.

I’m stable. 4 years in. I still don’t know how to work this platform. Feel free to text me anytime.

Hi all, for your safety personal contact information has been removed from the comments in this thread. We recommend sharing personal contact information using the secure private message function rather than in the public forum.

However, I'd also like to point out the benefit of sharing here in the support group where you all receive support and information from several people and learn from each other, as well as help others with this rare cancer find you and your support.