peritoneal carcinomatosis
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I would also like to know the answer (see Marcia's above). Mods? Can you help us? Surely there are more of us that are dealing with this-more members than a year ago. Marcia and I can't be the only ones!!!
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@claireinaz Thank you for your post. I conducted a search to find the latest discussions about peritoneal carcinomatosis, and this appeared to be the most recent post. I did come across one additional post from a community member mentioning it, but there was not much discussion or shared experience within the thread. Please let us know if there is something in particular that we can assist you with regarding PC.
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no thanks mods. Just trying to reassure myself that I’m not such an oddity for having these metastases. I guess I maybe am. Whistling my way past the graveyard, so to speak. I might try a diff forum search at a different website.
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Hi Claire ~ from what I have read we are a rarity. Almost always lobular. I was just looking for the % of us that get the metastasis to peritoneum but cannot find it. Maybe Cleveland Clinic, Mayo, or John’s Hopkins? Anyway cannot find it again. So as far as this group is concerned it really may be just you and me. How are you?
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Hi- I see this thread has not been accessed since 2017. and hope some of you are still active on this website. I've had peritoneal mets since 2019 and it continues to this day, on and off in scans depending on success of whatever drug I'm on. I'm on my 10th line of treatment starting next week- Navelbine. Just off of Eribulin because some areas got worse even though some improved. Enhertu was my best chemo for 2 1/2 years!! How is everyone doing? hugs to all- Nina
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Hi @ninaca - there has been a little activity on this page this year in May and then I see back in 2025 that you were commenting as well. We are a rarity having the peritoneal metastasis. I’m glad to hear that you are still doing well and have been on Xelota for such a long time! That is very promising! I am happy for you and you give me hope as well. My oncologist is very doom & gloom. I have been wondering about Enhurtu….best of luck on your next line of treatment and look forward to hearing how you are doing. 🧡
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hi Marcials1, looks like we are both traveling a road with lots of surprises. Sorry you have to deal with the doom and gloom. of your MO. I’m going on my 10th line of therapy next week, Navelbine. don’t know much about it, it’s an older medication. i was Her2 low which is why Enhertu worked for me so well. i get tired most days and take a nap. just woke up to your email. my latest PET showed bone activity for the first time- my T12. i get to start zometa soon! Take care 💕
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Hi @ninaca good to hear back from you. Yes we are traveling a road with lots of surprises and bumps in the road too. I am now Her2 low also. Or at least I believe that’s what my oncologist told me a few months ago. I need to follow up with her on that. She’s not very talkative. That’s why I was thinking Enhurtu might be my next line. But also my mets we’re have mutated and I don’t think Enhurtu will work for me at this point.
I hope Navelbine works for you. Please let me know. My bone mets are scattered but my largest spot is on T12 also. the disease.0 -
hi again @ninaca I wasn’t done typing, but my message was sent by accident! I was going to say that I think the T12 mets are related to the fact that we both have peritoneal mets as well. I had the T12 mets and then it spread to peritoneum. And it sounds like you were the opposite… You had the peritoneal and then the T12?
I don’t know if you’ve heard any of the Zometa side effects but what I found worked for me when I was taking it was about an hour and a half before the injection, I would take a Tylenol with a lot of water. I also asked that I had fluids/saline along with the Zometa at the same time. To keep me hydrated. I only had three or four rounds, but I never had any side effects at all. I hear a lot of women taking Zometa get tough flu like reactions. So just thought I’d give l you that little bit of advice that I found here on the Zometa thread and pass it along to you for what it’s worth! Best of luck to you on the new line of treatment and the Zometa! Hope to hear from you ~ take care.
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Marcials1, Just got my labs today and left my port in so I'll be ready first thing tomorrow. Thanks for the Zometa advice, I will talk to my dentist tomorrow to get his advice per my MO's request to make sure he thinks I'm okay to start the drug. Interesting about the T12! I'll get the Navelbine alone tomorrow, i'm expecting lower white blood counts. I would think positively about the Enhertu. It had me normal markers (first time in years) for a long time, and NED on scans. Of course the peritoneal mets don't always show what they are doing. Mine did go to the adnexal area (ovaries) but has gotten smaller. Well good luck. Nina
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Hi Nina, the T12 thing is pretty interesting! When I go see my ONC next month, I am going to talk to her about that. Hope your labs were good this week. Take care and best to you. Marcia
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