Secondary Peritoneum Carcinoma from Gallbladder Cancer - Need Information

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  • lourdes726
    lourdes726 Member Posts: 16
    #22
    westie66 said:

    Gallbladder Cancer and Peritoneum Cancer
    Hi Kathi and Lourdes: How grateful I am to see some other folks who have received the "gift" of peritoneum cancerous nodules after gallbladder cancer! I was beginning to wonder if I was the only one out there. My story in brief is this: I had gallbladder surgery laproscopically April 15, 2010. It was day surgery. The surgeon removed the gallbladder, its tumour, which had protruded into the liver, and part of the liver (keep in mind - day surgery!). The next day I was back, taken immediately to intensive care and had more surgery (apparently I had an infection and loss of blood - almost died). The surgeon noted the nodules on the peritoneum and omentum but did not cut them out because other patients he has seen usually had many microscopic ones that could not be seen and most of the patients died! So, after waiting 5 months for the infection to be eliminated (and withi an incisional hernia to boot) I started chemo in October 2010 - cisplatin/gemcitibine - which continued until February. No other tumours showed up but the peritoneum nodules were still there. My CA125 number is well below normal thankfully as is my C19 (haven't had CEA done). So the oncologist is trying out a treatment used in metasticized colon cancer to the peritoneum - oxaliplatin (which I have to pay for $$$$)/irenotecan/leucovin/5FU (pump) and I'm on my 4th treatment. Lots of side effects but so far controllable. I have an MRi next week to see if anything is happening.
    I was recommended for the peritoneal removal surgery plus HIPEC but was turned down - only 2 surgeons do it in canada and they are in calgary (I'm in Ontario).

    I am now retired thankfully but doing well. That's my story! I'm so excited to find you two out there!

    So, we have a new discussion board - Peritoneum Cancer - for you to check out. Just started.

    Cheryl

    gb cancer
    Hi Cheryl,
    I do not have any spread of GB cancer and at this time I am cancer free. I am hoping for the best. I wanted to post as there are so few people with this disease. I would like to see more GB survivors post there stories. I do visit this forum often, although I don't usually post. I think it is wonderful that you are willing to share your story with others. Best of luck to you.

    Lourdes
  • westie66
    westie66 Member Posts: 642
    #23
    lourdes726 said:

    gb cancer
    Hi Cheryl,
    I do not have any spread of GB cancer and at this time I am cancer free. I am hoping for the best. I wanted to post as there are so few people with this disease. I would like to see more GB survivors post there stories. I do visit this forum often, although I don't usually post. I think it is wonderful that you are willing to share your story with others. Best of luck to you.

    Lourdes

    Gallbladder Cancer
    Hi Lourdes: Thanks for replying! There are several places on the Rare and other cancers devoted to Gallbladder cancer only. You might want to take a peek at those too.
    Cheryl
  • maudsie
    maudsie Member Posts: 54
    #24
    westie66 said:

    Gallbladder Cancer and Peritoneum Cancer
    Hi Kathi and Lourdes: How grateful I am to see some other folks who have received the "gift" of peritoneum cancerous nodules after gallbladder cancer! I was beginning to wonder if I was the only one out there. My story in brief is this: I had gallbladder surgery laproscopically April 15, 2010. It was day surgery. The surgeon removed the gallbladder, its tumour, which had protruded into the liver, and part of the liver (keep in mind - day surgery!). The next day I was back, taken immediately to intensive care and had more surgery (apparently I had an infection and loss of blood - almost died). The surgeon noted the nodules on the peritoneum and omentum but did not cut them out because other patients he has seen usually had many microscopic ones that could not be seen and most of the patients died! So, after waiting 5 months for the infection to be eliminated (and withi an incisional hernia to boot) I started chemo in October 2010 - cisplatin/gemcitibine - which continued until February. No other tumours showed up but the peritoneum nodules were still there. My CA125 number is well below normal thankfully as is my C19 (haven't had CEA done). So the oncologist is trying out a treatment used in metasticized colon cancer to the peritoneum - oxaliplatin (which I have to pay for $$$$)/irenotecan/leucovin/5FU (pump) and I'm on my 4th treatment. Lots of side effects but so far controllable. I have an MRi next week to see if anything is happening.
    I was recommended for the peritoneal removal surgery plus HIPEC but was turned down - only 2 surgeons do it in canada and they are in calgary (I'm in Ontario).

    I am now retired thankfully but doing well. That's my story! I'm so excited to find you two out there!

    So, we have a new discussion board - Peritoneum Cancer - for you to check out. Just started.

    Cheryl

    Cheryl and everyone
    Hi, Maudsie here. I haven't been here for a while, and am just now reading, Cheryl, of the peritoneal involvement with your GBC. Is that a fairly new finding? I would think that since the cancer is of gallbladder origin, that the CA 19-9 test would be the most appropriate. Although we know how unreliable these markers are except for spotting a general trend. I think your new chemo regimen is very promising. I would love the idea of the intraperitoneal treatment for you, which brings the chemo directly face to face with the nodules in question....but that treatment is hard to find and hard to get, I believe. I am very interested, too, in what Alice had to say, and Kathy and Tina, too.
    Well, just dropped by to say HI to you all, and Lourdes, too! I am doing fine, my three-year anniversary since diagnosis is on Friday (July 1) and I have a CT scan later in July....of course I am nervous about it, but MUCH less so, the farther out I get!!!

    love and luck to all,

    Maudsie
  • katchris
    katchris Member Posts: 2
    #25
    GB cancer reocurr in peritoneum
    Hi again. My GB cancer was stage 2. It was in a lymph node, and I guess in my blood system to carry it to my peritoneum. The oxalplatin wasn't working as my ca19-9 was going up 100 points every 2 weeks. I'm back on gemzar & cisplatin, what I did before. Hope it works. My DR. said there is nothing else I can do. Can't believe that!! I'm not ready to give up the ship. I'm checking out other options & any input would be greatly appreciated. Hope all out there are doing well. Kathy
  • westie66
    westie66 Member Posts: 642
    #26
    katchris said:

    GB cancer reocurr in peritoneum
    Hi again. My GB cancer was stage 2. It was in a lymph node, and I guess in my blood system to carry it to my peritoneum. The oxalplatin wasn't working as my ca19-9 was going up 100 points every 2 weeks. I'm back on gemzar & cisplatin, what I did before. Hope it works. My DR. said there is nothing else I can do. Can't believe that!! I'm not ready to give up the ship. I'm checking out other options & any input would be greatly appreciated. Hope all out there are doing well. Kathy

    GB Cancer and Peritoneum Cancer
    Hi Kathy: Gemzar (Gemcitibine in Canada) and Cisplatin didn't work for me, at least for the nodules on the peritoneum. I am on oxaliplatin/irenotecan/5FU/leucovin now (finished 6th treatment). This regime is used for colon cancer and has shown some success getting rid or slowing down the peritoneum spread with that cancer. My CA19-9 number is right in normal range. The peritoneum nodules haven't increased in number or size on this regime but they haven't shrunk much either. I've had them for at least 2 years. I think the intra-peritoneum chemo offers the best hope as the chemo gets in direct contact with the nodules. But as has been said, the treatment is hard to find (especially in Canada!). Peritoneal stripping is a very invasive surgery that seems to work well for the ovarian folks but hasn't had big success for gallbladder cancer folks. My gallbladder cancer was stage IV. I'm not a "nothing more can be done" believer either! Let me know what you find out!
    Cheryl

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