Peritoneal Cancer Chemotherapy

lzzeb
lzzeb Member Posts: 3 Member

Good morning, I was officially diagnosed with Peritoneal Cancer on 10/04/2024 so I am new to this and it is terrifying. I have a primary tumor and it has spread to a portion of my liver. The plan is to do three rounds of chemo Carbo and Taxol plus Avastin and then have surgery. My first chemo was scheduled for October 18, but I developed colitis and had to take a weeks worth of antiobiotics two of which by IV in the hospital and then orally at home. I have had paracentesis to remove Ascites the first one on 10/08 2 liters removed and another while I was in the hosipital of which 3 1/2 liters were removed. I had first Chemo on Thursday 10/24. It went well as far as I know. The nausea drugs work well. However this morning at about 3 am I had a huge dark reddish brown bowel movement with little warning. Cleaned myself up and went back to bed and had another one at around 8 am. Have you heard of this? Could my body be expelling dead cancer cells? Are there any other mysterious things I can expect?

I am a 20 year breast cancer survivor and my current cancer was confirmed to be unrelated to the poor cancer. I am also shocked at how quickly by strength has deteriorated. It is difficult to eat more than a few bites of food, so my energy level is very low. I also have developed edema in my legs and am wearing compression stockings for the first time in my life. I am 70 years old and retired on April Fools day of this year. Ironic isn't it.

Deb from Rowlett, TX

Comments

  • jbmorris
    jbmorris Member Posts: 1 Member

    Hi Deb,

    I’m so sorry to hear of your recent diagnosis. This is such a terrible disease. My mom was diagnosed with primary peritoneal cancer in July. I was wondering if you’d be interested in communicating with her offline? She is being treated at City of Hope in GA. They have put her in contact with other cancer patients/survivors but no one with peritoneal cancer. I’m just looking for some support for her (and you!) with this specific kind. Let me know if you’d be interested.

  • lzzeb
    lzzeb Member Posts: 3 Member

    Good evening JB, I would love to correspond with your mom. I am in Rowlett, TX which is a suburb of Dallas. I have had my first round of chemo and am already feeling better. My care team has been very supportive.

  • Urnmywy
    Urnmywy Member Posts: 26 Member

    I would also like to talk to you both, I was Diagnosed in July 2020, 8 months of treatment, then NED, no evidence of disease , and now my cancer marker tests, HE4, and a DNA on my blood have indicated RTC , recirculating tumor cells, are multiplying. I just can't find anyone to talk to either.

  • lzzeb
    lzzeb Member Posts: 3 Member

    Good Morning! I am a newbie to the Peritoneal cancer experience so not sure how much help I will be. I did have genetic testing and tested positive for BRCA2 and PD-LI 922c3) It is recommended that my daughter and grandaughter be screened as well. I read the report but most of itbis Greek to me. I am having chemo every 3 weeks and will have my second infusion on November 14. My chemo is Paclitaxel/Carboplatin. I am pleased with the results so far, my ascites has declined to the point that I am losing a pound a day when before I was gaining 1-2 pounds per day. I have had 3 Perisenthesis to remove the accumulated fluid. Each time they removed approximately 3 liters of fluid. The inflation in my legs and feet and has also been significantly reduced and I no longer look like I am 9 month pregnant. . I am also able to eat more now which has given me much more strength and energy. My hair started falling out this week, so my hairdresser gave me a buzz cut and trimmed my wig for me. I think I will mainly wear caps and scarves though.

    My oncologist says after the 3rd chemo I will have surgery to remove the tumor and any other affected areas. He said they will also remove my ovaries and the part of my liver that has been affected. Then there will be more chemo.

    When I was first diagnosed I was as weak as a kitten. I could not eat more than a couple of bites of food which left me with abolutely no strength. I am speculating the chemo has shrunk the tumor which gives my stomach more capacity.

    I really don't know the long term prognosis but I am trying to stay positive and celebrate the small victories.

    Best,

    Deb

  • Urnmywy
    Urnmywy Member Posts: 26 Member
    edited November 11 #6

    I have survived primary peritoneal for 31 months so far, if you’re interested I can visit

  • ZsaZsaGiGi
    ZsaZsaGiGi Member Posts: 5 Member

    I was diagnosed in June of 2023. Peritoneal cancer is not cure able but treatable. There aren’t that many known treatments for this rare form of cancer. Infections are a big problem that can cause delays in treatments. I know of two women ages 48 and 66 that unfortunately didn’t make it more than 1 year. 7 in 1 million are diagnosed in a year. I have been on experimental treatments that worked for a while. I have never been cancer (NED no evidence detected) since diagnosed. Glad to know others who are also fighting this. I had hysterectomy in October 2023 and ostomy since it had spread to my colon. Every day is a blessing. I wish more research was being done for this form of cancer.

  • Urnmywy
    Urnmywy Member Posts: 26 Member

    what sort of trials are you doing? My numbers are on the rise so mine is detectable again, I’ve been doing my own natural remedies recently like B17, from apricots seeds, only 3 a day, and a cancer protocol with Ivermectin. Then 50K iu of vit C IV….. every6 weeks, & a mushroom supplement. Hope to talk to you soon…

  • ZsaZsaGiGi
    ZsaZsaGiGi Member Posts: 5 Member

    Duke suggested Elahere since I was allergic to the taxol drugs. Later became Carboplatin resistant also. I had 7 treatments of Elahere every 3 weeks and it quit working I am now on cytocan orally daily and an iv every 2 weeks /Bevacizumab. I have CT scan Dec2. I am stage 3c.

  • Urnmywy
    Urnmywy Member Posts: 26 Member
    edited November 26 #10

    I hope your new treatments works well, I’m headed out of state to City of Hope to see if they have some better treatments to keep me from getting to a higher stage. I think this is helping!

    [Edited by CSN Support Team]

  • ZsaZsaGiGi
    ZsaZsaGiGi Member Posts: 5 Member

    It is a scary disease since even though they treat peritoneal cancer and ovarian cancer the same the results aren’t always favorable to peritoneal cancer patients. You have to trust in your doctors and the treatments and try to stay as positive as you can. I am 17 months out which is good for this disease. I have been under treatment since July of 2023. I was diagnosed in June of 2023. What is your CA125? I will have a CT scan Dec2. If you want you can email me personally. We are in a small group of patients with this rare disease. If I can answer any questions I will try to share my personal journey.

  • martabatha
    martabatha Member Posts: 1 Member

    Hi Deb! I am so glad for you… what a battle we are in! I have been diagnosed too.. still cant find origin.. I hate the acitis… horrible. Started estrogen blocking pills and its a little better… going to get a MRI for my breasts… Keep in touch… Marta