Primary Peritoneal Cancer /Breast Cancer Survivor

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  • westie66
    westie66 Member Posts: 642
    #22
    AussieMaddie said:

    You said:
    "I would loved to
    You said:
    "I would loved to talk with others who have the same cancer"

    Having been told from the start that PPS was rare, I've been surprised by the number of people here who have it, but to find them, you must look under "Ovarian Cancer" or "Rare and other cancers" as you find here. I've also looked under "Gynecological Cancers (other than ovarian and uterine)" to see if I could find some reference to PPC.

    The references turn up everywhere.

    That's why I'm voting, along with some others, to have a separate PPC board. It would be good to know where to go exactly when this subject comes up.

    Look around the discussion boards and you will find others to shae with you.

    Good luck :)

    Peritoneal Carcinoma
    HI: I, too, have peritoneal carcinoma, but it is secondary having originated from gallbladder cancer. I had my gallbladder, its tumour, and part of the liver where the tumour protruded from the gallbladder, removed during surgery April 15/10. All that was left were a few nodules on the peritoneum and the omentum but the surgeon didn't cut them out as he hasn't had much luck doing that (worried about the microscopic ones he couldn't see). Anyways, I went on a cisplatin/gemcitibine treatment regime. It looked like it was working as the nodules did not show up on CT or MRI scans. But that wasn't real because they just were not identified until a final scan that showed them clearly - the radiologist went back through all the scans and sure enough they were there all the time. Anyways, I am now on a regime used by colon cancer patients - colon cancer can metasticize to the peritoneum as well and the regime they use for that is called FOLFOXFIRI - oxaliplatin, irenotecan, 5FU by infusion during chemo and for 46 hrs after with a pump, and leuco...something or rather. The oxaliplatin is another platinum drug but very very strong with quite astonishing side effects. So the treatment for peritoneum cancer seems to vary depending on where the cancer cells originated. I guess the Primary Peritoneum Cancer cells are comprised of tissue very much like ovarian tissue. So treated differently (but I still don't understand this!!! do the cells that arrive there keep their own identify???).

    I would very much like to see a separate discussion board on this as I too think it is way more common than we're led to believe. It results 50% of the time from ovarian cancer so that is where most of the discussion has been.

    Cheryl
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #23
    westie66 said:

    Peritoneal Carcinoma
    HI: I, too, have peritoneal carcinoma, but it is secondary having originated from gallbladder cancer. I had my gallbladder, its tumour, and part of the liver where the tumour protruded from the gallbladder, removed during surgery April 15/10. All that was left were a few nodules on the peritoneum and the omentum but the surgeon didn't cut them out as he hasn't had much luck doing that (worried about the microscopic ones he couldn't see). Anyways, I went on a cisplatin/gemcitibine treatment regime. It looked like it was working as the nodules did not show up on CT or MRI scans. But that wasn't real because they just were not identified until a final scan that showed them clearly - the radiologist went back through all the scans and sure enough they were there all the time. Anyways, I am now on a regime used by colon cancer patients - colon cancer can metasticize to the peritoneum as well and the regime they use for that is called FOLFOXFIRI - oxaliplatin, irenotecan, 5FU by infusion during chemo and for 46 hrs after with a pump, and leuco...something or rather. The oxaliplatin is another platinum drug but very very strong with quite astonishing side effects. So the treatment for peritoneum cancer seems to vary depending on where the cancer cells originated. I guess the Primary Peritoneum Cancer cells are comprised of tissue very much like ovarian tissue. So treated differently (but I still don't understand this!!! do the cells that arrive there keep their own identify???).

    I would very much like to see a separate discussion board on this as I too think it is way more common than we're led to believe. It results 50% of the time from ovarian cancer so that is where most of the discussion has been.

    Cheryl

    Hi Cheryl
    I usually post on the Ovarian board. I have PPC and have now sent 2 emails to the administrator requesting a separate PPC discussion board. I have not had any replies yet so if you want to lobby and send a message too it might quicken upthe process.

    Thanks Tina
  • westie66
    westie66 Member Posts: 642
    #24
    Tina Brown said:

    Hi Cheryl
    I usually post on the Ovarian board. I have PPC and have now sent 2 emails to the administrator requesting a separate PPC discussion board. I have not had any replies yet so if you want to lobby and send a message too it might quicken upthe process.

    Thanks Tina

    Peritoneum Cancer
    Hi Tina: Yes, I follow your posts there, too. Can we call it something like Primary and Secondary Peritoneum Cancer as it seems to result from appendix and other gastro/GI primary cancers as well as ovarian and on its own? How are you doing? This 3rd round of folfoxfiri is much better because the oncologist reduced the amount of chemo and its infusion rate so most of the neuropathy is very slight and diarrhea hasn't happened yet (but I oh so crave an ice cold glass of water or a cold milkshake!). Can you give me a hint how to contact the Administrator? I'm not sure I see a "slot" for that. Thanks!
    Cheryl
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #25
    westie66 said:

    Peritoneum Cancer
    Hi Tina: Yes, I follow your posts there, too. Can we call it something like Primary and Secondary Peritoneum Cancer as it seems to result from appendix and other gastro/GI primary cancers as well as ovarian and on its own? How are you doing? This 3rd round of folfoxfiri is much better because the oncologist reduced the amount of chemo and its infusion rate so most of the neuropathy is very slight and diarrhea hasn't happened yet (but I oh so crave an ice cold glass of water or a cold milkshake!). Can you give me a hint how to contact the Administrator? I'm not sure I see a "slot" for that. Thanks!
    Cheryl

    Hi Cheryl
    I sent an email by clicking on the "Contact CSN" in the top right hand corner. I can't understand why I haven't had a reply. I am OK at the moment, keeping my fingers crossed as I have my 6 weekly check up next Thursday.
    Tina
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #26
    westie66 said:

    Peritoneum Cancer
    Hi Tina: Yes, I follow your posts there, too. Can we call it something like Primary and Secondary Peritoneum Cancer as it seems to result from appendix and other gastro/GI primary cancers as well as ovarian and on its own? How are you doing? This 3rd round of folfoxfiri is much better because the oncologist reduced the amount of chemo and its infusion rate so most of the neuropathy is very slight and diarrhea hasn't happened yet (but I oh so crave an ice cold glass of water or a cold milkshake!). Can you give me a hint how to contact the Administrator? I'm not sure I see a "slot" for that. Thanks!
    Cheryl

    Hi Cheryl
    I sent an email by clicking on the "Contact CSN" in the top right hand corner. I can't understand why I haven't had a reply. I am OK at the moment, keeping my fingers crossed as I have my 6 weekly check up next Thursday.
    Tina
  • westie66
    westie66 Member Posts: 642
    #27
    Tina Brown said:

    Hi Cheryl
    I sent an email by clicking on the "Contact CSN" in the top right hand corner. I can't understand why I haven't had a reply. I am OK at the moment, keeping my fingers crossed as I have my 6 weekly check up next Thursday.
    Tina

    Peritoneum Cancer
    Hi Tina: OK, will do! I, too, have my MRI on July 6 - the one that will show (or not) whether the folfoxfiri regime is having any impact at all on the peritoneum nodules. I sure hope so!!!!! good luck with your check up Tina - let me know how it goes. Will be thinking about you.
    Cheryl
  • Cdemaio
    Cdemaio Member Posts: 4
    #28
    Hi Everyone
    The PPC website is TERRIBLE! All the stories are about people who died in 12months! My mother was diagnosed 2 weeks ago, definitely a shock. She had no pain of any kind but then she felt discomfort during her last pap smear which is how they found it. She had an 8cm mass and two itty bitty nodules. The doctor said that he left her visibly cancer free after surgery and that he considered it a total success. We just received the pathology report and it showed no cancer anywhere except for in 1 lymph node of the 36 he biopsied. SHe said to her that this can be curable.....Thanks to her will to live and her perfect health (prior to this). She is raising my 7 year old niece so she has a lot to live for. So guys, tell me your thoughts....Can she beat this or are the chances of recurrence just so high? They said she is stage 11 (but borderline 3)
    Thanks everyone!
    Taylor

    Chzwoman@yahoo.com
  • Cdemaio
    Cdemaio Member Posts: 4
    #29
    Hi Everyone
    The PPC website is TERRIBLE! All the stories are about people who died in 12months! My mother was diagnosed 2 weeks ago, definitely a shock. She had no pain of any kind but then she felt discomfort during her last pap smear which is how they found it. She had an 8cm mass and two itty bitty nodules. The doctor said that he left her visibly cancer free after surgery and that he considered it a total success. We just received the pathology report and it showed no cancer anywhere except for in 1 lymph node of the 36 he biopsied. SHe said to her that this can be curable.....Thanks to her will to live and her perfect health (prior to this). She is raising my 7 year old niece so she has a lot to live for. So guys, tell me your thoughts....Can she beat this or are the chances of recurrence just so high? They said she is stage 11 (but borderline 3)
    Thanks everyone!
    Taylor

    Chzwoman@yahoo.com
  • Cdemaio
    Cdemaio Member Posts: 4
    #30
    Hi Everyone
    The PPC website is TERRIBLE! All the stories are about people who died in 12months! My mother was diagnosed 2 weeks ago, definitely a shock. She had no pain of any kind but then she felt discomfort during her last pap smear which is how they found it. She had an 8cm mass and two itty bitty nodules. The doctor said that he left her visibly cancer free after surgery and that he considered it a total success. We just received the pathology report and it showed no cancer anywhere except for in 1 lymph node of the 36 he biopsied. SHe said to her that this can be curable.....Thanks to her will to live and her perfect health (prior to this). She is raising my 7 year old niece so she has a lot to live for. So guys, tell me your thoughts....Can she beat this or are the chances of recurrence just so high? They said she is stage 11 (but borderline 3)
    Thanks everyone!
    Taylor

    Chzwoman@yahoo.com
  • Cdemaio
    Cdemaio Member Posts: 4
    #31
    computer error....sheesh
    Why did this post, post so many times? sorry guys

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