Peritoneal carcinomatosis

Amyb1228

Hi, I have a dear friend who has just been diagnosed with Stage IV peritoneal carcinomatosis. The original cancer was ovarian but is now in the stomach lining. She has started chemo, consisting of a combo of carboplatin and Doxorubicin. Unfortunately the Doxo caused an instant allergic reaction, so they continued on with the carbo. For the next treatment they will replace the the doxo with gemcitabine. She is also on Neulasta.

We want to find other folks who have had this diagnosis and can talk about their experience, prognosis, any tips or perspective to share. We want to be as helpful and supportive of our friend as possible. Sincere thanks -

Jaeatloz

Hi, I was diagnosed in October 2021. Had 4 chemo treatments then surgery and then 4 more treatments. Surgery was to blast tumors and remove omentum. We discovered my cancer is resistant to platinum based chemos, plus my body reacts with more toxcicity than others do. Over the past 22 months I have had carbo, taxol, doxil, cytoxan, avastin, neulasta, keytruda, rubraca. Some are chemos, some are monoclonal antibodies, some are combined with others....like Keytrufa, avastin, and cytoxin. I definitely cannot take Keytruda. Started breaking out in a rash in less than an hour of taking it. That can be controlled, but I also had severe headaches and other reactions. Currently I am taking a break from all treatments. My best advice is....your friend must be her own advocate. Learn as much as possible about each med they give her or want to give her. Know what the side effects can be and make her own decisions. For instance, I lost about half of my heating in one ear and 3/4ths in the other that will not recover and wear hearing aids now. That is ok. But the only chemo that they think might work for me has the number one side effect listed as blindness and it is hi risk. That is not ok with me. I am going to be 80 soon. So how I spend my remaining days is very important. If I were younger I might have a different opinion. I would rather feel well for the most of those days and sick for a few then feel yuckky most of the time . I don't want to be stuck in bed, or close to a toilet, etc. And the treatments can make you pretty sick. for me, moreso than the cancer has, so far. My med team know what I want, as does my family and they agree with me. Speaking of med team, you have to like and trust them. And you have to tell them every little thing. It seems peritoneal cancer can have all kinds of symptoms that you might not recognize. Talk to the docs about them. I actually keep a journal between visits. Plus, I don't hesitate to call now. Not to be a pest, but when I really don't know what to do. In the beginning, I didn't. That's how I found out they are really there for me. If they aren't - change docs. On being a friend....just be there. My friends brought food on occasion, we without asking. Walked our dog, who needed exercise. Just showed up and mowed our grass. One good friend comes every 3 weeks and does basic cleaning. Just different things, knowing that my husband was busy and stressed, too. Telling to call if they need anything probably won't work. I find most won't. Just call before you head to store and ask if they need milk, bread, eggs, etc. Just think of the common stuff that occurs. Prognosis: My cancer is incurable. So make the best out of every minute, just like everyone should, everyday. Be kind to yourself and to each other.

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God bless

Amyb1228

https://csn.cancer.org/discussion/comment/1708412#Comment_1708412

First of all - God bless you for writing back! I’m so touched that you shared so much great information, and made such good suggestions. I will pass this along to her. My deepest thanks and best wishes to you for your journey.

SMATHENY12

I was diagnosed in Aug 2011 and lost my omentum as well it came back 3 times. I did the cyto reduction with hipec in 2011 and 2014. Chemo was 12 time of foxhole with a repat in 2021. Tell her to keep fighting and take it one day at a time

SMATHENY12

Foxfol