Peritoneal carcinomatosis

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

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

Hi there. I was just wondering how your friend is doing? My mom was recently diagnosed with peritoneal carcinomatosis that started as stage 3 colon cancer. I am here for more information as there is very little online on what to expect.

Update for me. 2 more times it has come back. 6 time survivor. 7 total surgeries. Another round of chemo in 2021. Last surgery may 2024.

What stage were you diagnosed with? I heard the HIPEC surgery is very rough, but successsful, however, I did see there is an 80% recurrence. How are you doing now? Sending prayers.

What treatment caused the deafness and which one could cause blindness? I was diagnosed in June 2023 and have tried a lot of what you have taken. Was allergic to first three treatments I never took keytruda. I tried Elahere and was successful for 7 treatments every 3 weeks. It was experimental and for people allergic to 3 treatments and Carboplatin resistant. It affected my eyesight but it cleared up after a while. It shrunk lymph nodes but quit working. I had surgery in October of 2023 after 6 rounds of Gemzar and Carboplatin. After surgery and around 6 weeks continued Gemzar and Carboplatin for 6 treatments but it had quit working. That is when I did Elahere. I went to Duke and they recommended a pill cyclophosphamide and IV Bevacizumab. I took from mid August to now. Last IV was Nov27. It quite working. I am starting steroid regiment Friday Dec6 and desensitizing to Taxol Monday Dec9.
My first three treatments in July of 2023 sent me into shock. They were Paclitaxel, Taxotere,and Doxil. This delayed treatment but then found Gemzar which as I mentioned I took. My current problem is enlarged lymph nodes. At present time the treatments and surgery has taken care of the organs it was once invading. The Taxol I start will be given slowly (8 hours). The goal is to attack my enlarged lymph nodes. In Oct of 2023 I had a hysterectomy, umbilical removed, and part of colon and sigmoid removed leaving me with a permanent Ostomy bag and a growing hernia. I was debulked. This is my only surgery and am not eligible for more surgery or radiation. I am hoping that the Taxol will be tolerated and shrink my lymph nodes. I am days away from being 74. I was diagnosed as 3c with no BRACA1 or 2. So mine was not inherited. My sisters took test also and were negative. I have cancer in my history but nothing showed up on test. I had never heard of peritoneal cancer. It is rare. 7 in 1 million per year. Everyone’s journey has been different. Before surgery I was on 7 anti nausea meds. I lost 30 pounds. After surgery I tolerated most treatments and have felt good. I have mild neuropathy in hands and feet. Thanks for sharing your journey. I have faith in my medical team. They listen and stay positive in my treatments. Cancer cells seem to figure out what is going on and my experience is after 6 treatments or so I have to be switched to something else.