Welcome to everyone

Tina Brown
Tina Brown Member Posts: 1,036 Member
edited June 2011 in Peritoneal Cancer #1
Yipeee, after a few weeks of lobbying for this new cancer discussion board we finally have it. I am so pleased :)

Welcome to anyone who has been diagnosed with either Primary Peritoneal Cancer (PPC) or Secondary Peritoneal Cancer. It isn't the most ideal forum to meet new people and forge friends, but we have all been diagnosed with a realitively rare and in-curable cancer and information about it is very scarce and hard to find.

I have PPC and have been posting on the Ovarian boards as my chemotherapy treatment plan is identical to OVCA. However, I don't have OVCA as my ovaries are healthy.

I won't go into a long story about me in this particular message but I will say it is great to have our own messaging boards where we can come for help, support and advice about our rare and seemly un-heard of cancer. I have already made a lot of lovely friends on the ovca boards and hope to continue to talk to them and make new friends too.

Please get the message across to other people you may know who have PPC or secondary Peritoneal cancer and encourage them to post here. I understand that it will run on a trial basis so the administrators can gauge how popular it is before they let it run permantly. So therefore, please use it.



Lots of love Tina xxxxxxx
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Comments

  • eward
    eward Member Posts: 210
    #2
    share
    It is great to share information with others who are in the same boat. Thanks for getting this started, Tina!
  • lulu1010
    lulu1010 Member Posts: 367
    #3
    eward said:

    share
    It is great to share information with others who are in the same boat. Thanks for getting this started, Tina!

    Thanks so much!
    Thanks Tina and all who helped to get this board up and running. It will be easier to identify who has our particular situation.
    You can read my story on my profile. My only new news is that I have been out of chemo for a month. I am feeling pretty well but I had a busy weekend and today I am really tired. If that is my only complaint I need not complain!
    I am also applying for a vaccine trial at Cleveland Clinic. I should hear from them early July.
    Keeping you all in my prayers!

    Linda
  • TeaLurker
    TeaLurker Member Posts: 15
    #4
    Congrats
    Well done, Tina, and all who worked for this.

    The report that I got from a CT scan I had in mid-April showed "HISTORY Indication: OVARIAN, FALLOPIAN TUBE AND PRIMARY PERITONEAL CARCINOMA".

    This came as a surprise since only OVCA had been mentioned to me. I haven't pursued it, because I can barely grasp the OVCA part, so far, but I read your posts in hopes of educating myself in this area. Thanks!
  • westie66
    westie66 Member Posts: 642
    #5
    TeaLurker said:

    Congrats
    Well done, Tina, and all who worked for this.

    The report that I got from a CT scan I had in mid-April showed "HISTORY Indication: OVARIAN, FALLOPIAN TUBE AND PRIMARY PERITONEAL CARCINOMA".

    This came as a surprise since only OVCA had been mentioned to me. I haven't pursued it, because I can barely grasp the OVCA part, so far, but I read your posts in hopes of educating myself in this area. Thanks!

    Peritoneal Cancer New Discussion Board
    Now we have a place to chat and exchange information rather than having discussions spread over many other boards!
    TeaLurker: Now that is interesting indeed. How do they know it is primary peritoneal cancer rather than secondary peritoneal cancer from the ovarian cancer seeding? As far as I know, the chemo treatment will be similar to that for ovarian cancer as the composition of the peritoneum is similar to that of the ovaries. There are surgical options for the peritoneum cancer (debulking, chemo bath, etc.) that many women on the ovarian cancer board have been through.
    Welcome!
    Cheryl
  • lulu1010
    lulu1010 Member Posts: 367
    #6
    TeaLurker said:

    Congrats
    Well done, Tina, and all who worked for this.

    The report that I got from a CT scan I had in mid-April showed "HISTORY Indication: OVARIAN, FALLOPIAN TUBE AND PRIMARY PERITONEAL CARCINOMA".

    This came as a surprise since only OVCA had been mentioned to me. I haven't pursued it, because I can barely grasp the OVCA part, so far, but I read your posts in hopes of educating myself in this area. Thanks!

    I know it is confusing.....
    I know it is confusing and I do not really understand my diagnosis either. I was told it was serous ovarian at first. Later I had the debulking and there was no cancer in my ovaries and I was told it was PPC but the cell came from the ovary. I was treated with carbo and taxol just as the ovarian patients recieve. My doctor actually advised me to just tell people I had OVCA as not many people would have any idea what PPC was. There may be some small differences in the way they act and small differences in treatment but really not much difference.
    Have you had surgery and started chemo?
  • VickiReed
    VickiReed Member Posts: 66
    #7
    Finally
    Thanks for lobbying for the Primary Peritoneal board. It was so difficult finding information especially during the initial diagnosis. I hope this board stays permenantly!
    I look forward to hearing other survivors stories!
    For those that don't know me, I was diagnosed almost 1 year ago with Stage 4 PPC.
    I was full of ascites and had to have my abdomen and lungs drained a few times until the
    chemo got rid of it. After 6 rounds of Taxol/Carboplatin and a debulking surgery, I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one in my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. On Thursday I go and find out my CT scan results after the
    complete 2nd cycle. I take the first round of cycle 3 on Friday. A round consists of
    Day 1-- Doxil, Avastin and Torisel
    Day 8---Torisel
    Day 15--Torisel
    I sure am hoping for some good news !!
    XXXX
    Vicki
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #8
    VickiReed said:

    Finally
    Thanks for lobbying for the Primary Peritoneal board. It was so difficult finding information especially during the initial diagnosis. I hope this board stays permenantly!
    I look forward to hearing other survivors stories!
    For those that don't know me, I was diagnosed almost 1 year ago with Stage 4 PPC.
    I was full of ascites and had to have my abdomen and lungs drained a few times until the
    chemo got rid of it. After 6 rounds of Taxol/Carboplatin and a debulking surgery, I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one in my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. On Thursday I go and find out my CT scan results after the
    complete 2nd cycle. I take the first round of cycle 3 on Friday. A round consists of
    Day 1-- Doxil, Avastin and Torisel
    Day 8---Torisel
    Day 15--Torisel
    I sure am hoping for some good news !!
    XXXX
    Vicki

    Hi everyone!
    This is fantastic to have PPC recognised as a cancer in its own right.
    Well done Tina for lobbying this.

    xxx LIz xxx
  • MissBee
    MissBee Member Posts: 8
    #9
    Mum2bellaandwilliam said:

    Hi everyone!
    This is fantastic to have PPC recognised as a cancer in its own right.
    Well done Tina for lobbying this.

    xxx LIz xxx

    Thank You Tina
    Thank's Tina for your persistence in getting this board.
  • Therese_Surges
    Therese_Surges Member Posts: 1
    #10
    Thank You
    My husband has peritoneal carcinomatosis and will be undergoing surgery (Cytodreduction and HIPEC) this Friday, July 1st. It's good to know that the disease will be brought to the forefront due to your lobbying - thank you for that.

    Therese
  • westie66
    westie66 Member Posts: 642
    #11
    Therese_Surges said:

    Thank You
    My husband has peritoneal carcinomatosis and will be undergoing surgery (Cytodreduction and HIPEC) this Friday, July 1st. It's good to know that the disease will be brought to the forefront due to your lobbying - thank you for that.

    Therese

    Secondary Peritoneum Cancer
    Hi Lulu1010 and all: yes it is very confusing because where the cancer originates (me, gallbladder cancer which grew into the liver) it will always be called that even though all that is left in me are 6 nodules on the peritoneum. So the treatment I am getting is one used in colon and other abdominal cancers - FOLFOXFIRI which is oxaliplatin/irenotecan/5FU pump/leucovin. I just finished the fourth treatment and have an MRI next week to see if that regime is working. I am not on a clinical trial except for analyzing the side effects of the irenotecan (serious diarrhea, sweating) - are the side effects related genetically? I had originally had cisplatin and gemcitibine but that didn't get the peritoneum nodules so we've gone for the big guns.

    Because the nodules originated as seeding from the gallbladder tumour, their composition is more like a gastro-intestinal tumour rather than an ovarian tumour. There are also folks on various discussion boards who got their peritoneum cancers from the appendix (another rare cancer) and the stomach and the colon. I applied for the surgery (debulking plus HIPEC) but there are only two surgeons that do it in Canada and they are in Calgary. I'm in Ontario. I was turned down even though I have only a few nodules.

    Today I had the 4th treatment (from 8 am until 2 pm) and so far the side effects are mild. My neuropathy from the oxaliplatin is mild (I even drank a glass of cold milk) I think because I am taking 5 grams of L-Glutamine, vit B6, and calcium/magnesium every day. Plus the oncologist reduced the dosage and infusion rate.

    I'd like to hear of other's experiences getting rid of those nasty peritoneum nodules!

    Cheryl
  • carolenk
    carolenk Member Posts: 907 Member
    #12
    Therese_Surges said:

    Thank You
    My husband has peritoneal carcinomatosis and will be undergoing surgery (Cytodreduction and HIPEC) this Friday, July 1st. It's good to know that the disease will be brought to the forefront due to your lobbying - thank you for that.

    Therese

    Early symptoms
    Dear Therese

    Sorry that you had to join us here. The information on the Internet about carcinomatosis is pretty grim, but the HIPEC treatment sounds hopeful for your husband. Would you mind sharing the early symptoms that your husband had before his diagnosis? Was there ascites involved?

    Thanks and (((hugs to both of you)))

    Carolen
  • eward
    eward Member Posts: 210
    #13
    VickiReed said:

    Finally
    Thanks for lobbying for the Primary Peritoneal board. It was so difficult finding information especially during the initial diagnosis. I hope this board stays permenantly!
    I look forward to hearing other survivors stories!
    For those that don't know me, I was diagnosed almost 1 year ago with Stage 4 PPC.
    I was full of ascites and had to have my abdomen and lungs drained a few times until the
    chemo got rid of it. After 6 rounds of Taxol/Carboplatin and a debulking surgery, I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one in my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. On Thursday I go and find out my CT scan results after the
    complete 2nd cycle. I take the first round of cycle 3 on Friday. A round consists of
    Day 1-- Doxil, Avastin and Torisel
    Day 8---Torisel
    Day 15--Torisel
    I sure am hoping for some good news !!
    XXXX
    Vicki

    VickiReed
    I am glad you are feeling pretty good, sorry about the side effects... How did they know you were platinum resistant?

    I am curious about this drug Torisel. Is it a chemo? I wish you the best of results with this current chemo you are on.

    xoxoxoxo
    Eileen
  • eward
    eward Member Posts: 210
    #14
    Therese_Surges said:

    Thank You
    My husband has peritoneal carcinomatosis and will be undergoing surgery (Cytodreduction and HIPEC) this Friday, July 1st. It's good to know that the disease will be brought to the forefront due to your lobbying - thank you for that.

    Therese

    Therese Surges.
    I have not heard of a man with peritoneal cancer yet. I wish you and your husband the best of possible results with his treatment.
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #15
    Congratulations on getting
    Congratulations on getting the board up!!!!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #16
    eward said:

    Therese Surges.
    I have not heard of a man with peritoneal cancer yet. I wish you and your husband the best of possible results with his treatment.

    Male peritoneal cancer
    I think it is impossible for a man to have Primary Peritoneal cancer as the tissue is the same as Ovarian. I would guess that a man would have Secondary Peritoneal cancer.

    Tina
  • abrub
    abrub Member Posts: 2,174 Member
    #17
    eward said:

    Therese Surges.
    I have not heard of a man with peritoneal cancer yet. I wish you and your husband the best of possible results with his treatment.

    There are plenty of men with PMP
    PMP = Pseudomyxoma Peritonei, a peritoneal cancer. It can originate from many organs - appendix, colon, gall bladder. It affects both men and women.

    Well, not really plenty of men - it is a rare cancer, but in the PMP groups, you do find many men who have had it.
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #18
    It's actualliy happened!
    Hi to all, and congratualions to Tina in particular for getting us this Peritoneal specific board. We finally have a place where people with peritoneal cancer can immediately see where to come. That's great news. We were scattered all over the place before.

    I can see no reason why a man cannot have peritoneal cancer since, as I understand it, the peritoneum is the same in everyone - a sheath that fits all around the perimeter of the abdomen to emit a fluid to protect all of the organs inside the abdomen. Cancer could start there or anywhere else and migrate to there. I know that the cells of the peritoneum and the ovaries are the same type, but maybe that has to do with the way the parts of the body are made up as we are formed in utero.

    Whatever the reason, I welcome too anyone who wants to support each other in this nuicance of a cancer.

    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #19
    Therese_Surges said:

    Thank You
    My husband has peritoneal carcinomatosis and will be undergoing surgery (Cytodreduction and HIPEC) this Friday, July 1st. It's good to know that the disease will be brought to the forefront due to your lobbying - thank you for that.

    Therese

    Welcome Therese
    Hi Therese,

    I wanted you to know that I too am thinking of your husband and wishing him well. I'm really glad that he knows there is a place where he can bring his concerns to. I hope that the surgery went well. I'm in Australia where I think we're ahead of you in time but I imagine that his surgery is over by now.

    Take good care.

    AussieMaddie
  • westie66
    westie66 Member Posts: 642
    #20
    AussieMaddie said:

    It's actualliy happened!
    Hi to all, and congratualions to Tina in particular for getting us this Peritoneal specific board. We finally have a place where people with peritoneal cancer can immediately see where to come. That's great news. We were scattered all over the place before.

    I can see no reason why a man cannot have peritoneal cancer since, as I understand it, the peritoneum is the same in everyone - a sheath that fits all around the perimeter of the abdomen to emit a fluid to protect all of the organs inside the abdomen. Cancer could start there or anywhere else and migrate to there. I know that the cells of the peritoneum and the ovaries are the same type, but maybe that has to do with the way the parts of the body are made up as we are formed in utero.

    Whatever the reason, I welcome too anyone who wants to support each other in this nuicance of a cancer.

    AussieMaddie

    Men and Peritoneum Cancer
    HI all: I don't know about PPT cancer in men, but I do know they can get it from other sources. For example, I know two men right here in Ontario who have secondary peritoenum cancer that spread from the gallbladder cancers they have. As I understand it, it is the nodules on the peritoneum itself that will reflect the origin of the cancer cells. Mine from gallbladder cancer so will "look like" gastro types cancer. My treatment is like that given for metatasized colon cancer - the treatment for gallbladder cancer didn't work. So it would seem to me that PPT originating on the peritoneum would have the properties of the peritoneum. I am stlll unsure why the peritoneum itself would be different in men than in women but maybe it starts in the womb somewhere?
    Cheryl
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #21
    Therese_Surges said:

    Thank You
    My husband has peritoneal carcinomatosis and will be undergoing surgery (Cytodreduction and HIPEC) this Friday, July 1st. It's good to know that the disease will be brought to the forefront due to your lobbying - thank you for that.

    Therese

    Therese ...
    It's good that this board now exists because I hadn't found any forums for men with PPC. I think it's a really good thing that the disease is seen as a cancer in its own right although this board may be of help with those who has metas to the peritoneum. :)

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