PRIMARY PERITONEAL CANCER

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  • katfrombuff
    katfrombuff Member Posts: 1
    #102
    blondecat said:

    cancer cancer...
    Gerris surgery lasted an hour longer than predicted. Even though she had a clean colonoscopy last month, cancer was detected on the outside of her colon. 12 inches of her small intestine and 6 inches of her large intestine were removed and stitched back together. Her remaining left ovary was cancer coated and removed. Her omentum was removed as was 2.5 liters of fluid. The tumor was also removed. Doctors said they removed all large masses of cancer. Pattysoo, what do you mean by ate carefully? Did you altar your diet in any way? Did your cancer metastisize to other organs? Colon? Has anybody else had part of their colon removed? Thanks for any answers..

    buffalo123
    Hi Colette,
    I am also from Buffalo and wondering if you are going to Roswell. I am BRCA1 and so is my sis. She has had breast , fallopian and now probably PPT. Hope we can talk soon. I would like to know your docs and advice you have gotten. Thanks
    Kathryn
  • KAlford
    KAlford Member Posts: 2
    #103
    nancy591 said:

    scary
    Caryn,

    Sorry to hear of your diagnosis. Once I started feeling better I too thought this all must be a big mistake. I don't think I joined until I completed my treatment too. I found this board way to scary....I still do. But I also find hope, understanding, support and stories of survival. I think most of us on here have issues with anxiety and fear of reoccurence. I too suffer from ongoing bowel issues and have been to the ER myself so I do understand!!

    I have two young kids so I don't have time to sit around feeling sorry for myself. I too find so much to do all day I don't know how I worked full time before. It was absolute HEAVEN to be home with my kids all summer. I stopped working when I was diagnosed.

    I wish you a lengthy remission!!!

    My Mother.
    My mother was diagnosed with PPC and the treatment was so hard on her. Now she is having a very rough time with her bowels as well. We have had to take her to the emergency room on numerous occasions. We have gotten to the point where we have had to start researching life alert systems for seniors . She is so stubborn about this, but it is either something like this or putting her in a care facility. It is just so hard for everyone involved and its just relieving to read some of the other posts on here. It is scary! But, also nice to know others are going through what my mother and family are. You all are in my prayers and thoughts!
  • pattysoo
    pattysoo Member Posts: 170
    #104
    blondecat said:

    cancer cancer...
    Gerris surgery lasted an hour longer than predicted. Even though she had a clean colonoscopy last month, cancer was detected on the outside of her colon. 12 inches of her small intestine and 6 inches of her large intestine were removed and stitched back together. Her remaining left ovary was cancer coated and removed. Her omentum was removed as was 2.5 liters of fluid. The tumor was also removed. Doctors said they removed all large masses of cancer. Pattysoo, what do you mean by ate carefully? Did you altar your diet in any way? Did your cancer metastisize to other organs? Colon? Has anybody else had part of their colon removed? Thanks for any answers..

    Eating carefully to me means...
    I tried to focus on foods that would really build me up after surgery. I usually eat very well, but surgery and recovery caused me to lose quite a few pounds and I was pretty weak (for me). So I tried to make every calorie count. I ate lots of high quality protein - animal and vegetable, leafy greens daily, some fruit, whole grains...you get the idea. I usually enjoy some kind of dessert each day, especially since I love to bake, but for the recovery time I eliminated most sweets in favor of more wholesome calories. My cancer stayed within my abdomen and was found on the serosa of several organs, but not metastasized yet. I didn't have any intestine removed - that sounds rough!
  • Daniel76
    Daniel76 Member Posts: 6
    #105
    Peritoneal Cancer
    Hello,

    I am from Germany so please forgive me for mistakes in language and terminology.
    My mom got diagnosed with Peritoneal Cancer that originated in Ovarian Cancer.
    The ovaries were taken out, as well as the bigger knots of the cancer but it spread everywhere so there is no way to remove it all. We have looked into the HIPEC therapy but were told that she doesn't qualify for it because part of her small intestines had been effected. She has done systemic chemotherapy which she reacted to well. The cancer disappeared but everyone knew it was going to come back. She had a laparoscopy done that confirmed that the cancer cells - though too small to be spotted on an ultra-sound - were still there and indeed growing back.
    We are told this will take approximately 9 months, then they'll try systemic chemotherapy again. This loop is to be repeated until the chemotherapy doesn't work anymore, at which point my mother will die.

    We have talked to a couple of specialists in Germany that all told us this was all that could be done.
    Reading entries on this forum I am reading about different medications patients in similar situations are taking in the US. My mom hasn't been prescribed nor been educated on any medication. So I thought I'd check in what ways Peritoneal Cancer is handled differently in the US from how it is approached in Germany.
    Does anybody have a list on which medication is commonly prescribed for that kind of cancer over here? What specifics of her condition should I found out about and get translated (e.g. stages - I wouldn't know what 'stage' her cancer is in)? What research should I do? Is there a way for me to talk to a US doctor on behalf of my mother (I live in Los Angeles but I don't have health insurance)?

    Any help would be really, really appreciated!

    Thank you very much for your time!

    Daniel
  • Tasgirl
    Tasgirl Member Posts: 85
    #106
    Daniel76 said:

    Peritoneal Cancer
    Hello,

    I am from Germany so please forgive me for mistakes in language and terminology.
    My mom got diagnosed with Peritoneal Cancer that originated in Ovarian Cancer.
    The ovaries were taken out, as well as the bigger knots of the cancer but it spread everywhere so there is no way to remove it all. We have looked into the HIPEC therapy but were told that she doesn't qualify for it because part of her small intestines had been effected. She has done systemic chemotherapy which she reacted to well. The cancer disappeared but everyone knew it was going to come back. She had a laparoscopy done that confirmed that the cancer cells - though too small to be spotted on an ultra-sound - were still there and indeed growing back.
    We are told this will take approximately 9 months, then they'll try systemic chemotherapy again. This loop is to be repeated until the chemotherapy doesn't work anymore, at which point my mother will die.

    We have talked to a couple of specialists in Germany that all told us this was all that could be done.
    Reading entries on this forum I am reading about different medications patients in similar situations are taking in the US. My mom hasn't been prescribed nor been educated on any medication. So I thought I'd check in what ways Peritoneal Cancer is handled differently in the US from how it is approached in Germany.
    Does anybody have a list on which medication is commonly prescribed for that kind of cancer over here? What specifics of her condition should I found out about and get translated (e.g. stages - I wouldn't know what 'stage' her cancer is in)? What research should I do? Is there a way for me to talk to a US doctor on behalf of my mother (I live in Los Angeles but I don't have health insurance)?

    Any help would be really, really appreciated!

    Thank you very much for your time!

    Daniel

    Hi Daniel
    I am from
    Hi Daniel
    I am from Australia and we do not do HIPEC there. I had the usual treatment of iv carbo/taxol after debulking surgery. After chemo there is no medication that I am aware of that you can take. A lot of people take supplements which seem to help some people. There are so many alternative treatments out there but whether they work who knows. There are also several books that you could buy in regards to alternative treatment.
    Wishing you and your mum all the best. Jenny
  • Daniel76
    Daniel76 Member Posts: 6
    #107
    Tasgirl said:

    Hi Daniel
    I am from
    Hi Daniel
    I am from Australia and we do not do HIPEC there. I had the usual treatment of iv carbo/taxol after debulking surgery. After chemo there is no medication that I am aware of that you can take. A lot of people take supplements which seem to help some people. There are so many alternative treatments out there but whether they work who knows. There are also several books that you could buy in regards to alternative treatment.
    Wishing you and your mum all the best. Jenny

    Thank you, Jenny. All the
    Thank you, Jenny. All the best to you!
  • SylviaWin
    SylviaWin Member Posts: 1
    #108
    rhondanna said:

    primary peritoneal cancer
    I had a good experience getting a second opinion at Mayo Clinic a few years ago, but recommend M.D. Anderson in Houston - they confirmed my doctor's treatment of me with Tamoxifen and said that 10% of women are "low-grade" meaning the tumors are slower growing, that traditional chemo does not work, that if you have estrogen receptors in your tissues hormonal agents seem to be working. I have been stable on Tamoxifen for a year. If that stops working there are other hormonal agents. I was diagnosed Stage 4 in January 2006.

    Primary Peritoneal Cancer
    Hi Rhondanna!
    Thanks for the info. I've been recently diagnosed with PPC at Cedars Sinai in LA. I'm moving to Dallas in July and will look up MD Anderson. Is there a Dr. you're working with at Anderson that you would recommend?
  • EllaSofia
    EllaSofia Member Posts: 2
    #109
    primary peritoneal carcinoma
    I was diagnosed with primary peritoneal carcinoma, stage IIIC in Oct 2009. Finally diagnosed after seeing three doctors. Transvaginal ultrasound didn't pick it up, only an abdominal CT and CA-215. Debulking surgery and 6 rounds of taxol and carboplatin followeed by 1 year of maintenance on taxol. First CT after completing maintenance showed new places not seen on earlier CTs. Because the new places were near the liver I was referred to a different surgeon and he said he didn't see tumor and said I could wait 2-3 months and re-scan or if I was really worried he would do surgery then. I decided to wait b/c I wanted some time without chemo or surgery to do things, get healthy and visit with family. I re-scanned recently and the area had grown. I am seeing surgeon tomorrow and will schedule more surgery. I would be interested in any information on any trials for this particular type of cancer.
  • EllaSofia
    EllaSofia Member Posts: 2
    #110
    Tina Brown said:

    Yes me
    I have PPC stage 4 that has mets to the lining of my lungs. I live in the UK and surgery is not an option for me because my cancer cells are too tiny to even consider any kind of surgery. I was diagnosed Nov 09 and had chemotherapy only. Carboplatin / taxol. 6 infusions every 3 weeks. My CA125 was 1119 and came right down to 34 while I was on this chemo. I had 7 months remission before it unfortunately reared its ugly head. But my oncologist has put me back on carb/taxol as we know it works for me. I have resigned myself to live my life on chemo as it is my hope of keeping this disease stable.

    I have had both lungs drained of the fluid accululation which gives me a good quality of life. I too am aware of the "text book" prognosis but we are not TEXT BOOKS ............... we are people who will defy the odds and will out live the TEXT book odds.

    Chemo is a good way of keeping our disease stable and as long as you can tolerate it grab it with both hands and enjoy your life.

    Much love Tina xx

    primary peritoneal carcinoma
    After surgery and completing 6 rounds of carboplatin and taxol and 1 year of maintenance with taxol, my CT indicates a problem near my liver. I am seeing a surgeon tomorrow. Didn't know if more chemo was an option but if you have it it more than once I am hopeful that I will too and it will work like it did the first time. Thanks for the inspiration.
  • eward
    eward Member Posts: 210
    #111
    EllaSofia said:

    primary peritoneal carcinoma
    I was diagnosed with primary peritoneal carcinoma, stage IIIC in Oct 2009. Finally diagnosed after seeing three doctors. Transvaginal ultrasound didn't pick it up, only an abdominal CT and CA-215. Debulking surgery and 6 rounds of taxol and carboplatin followeed by 1 year of maintenance on taxol. First CT after completing maintenance showed new places not seen on earlier CTs. Because the new places were near the liver I was referred to a different surgeon and he said he didn't see tumor and said I could wait 2-3 months and re-scan or if I was really worried he would do surgery then. I decided to wait b/c I wanted some time without chemo or surgery to do things, get healthy and visit with family. I re-scanned recently and the area had grown. I am seeing surgeon tomorrow and will schedule more surgery. I would be interested in any information on any trials for this particular type of cancer.

    This is an old thread, Ella
    You might want to re-type your message under a new post.

    My mom is looking for trials just like you.
  • VickiReed
    VickiReed Member Posts: 66
    #112
    EllaSofia said:

    primary peritoneal carcinoma
    I was diagnosed with primary peritoneal carcinoma, stage IIIC in Oct 2009. Finally diagnosed after seeing three doctors. Transvaginal ultrasound didn't pick it up, only an abdominal CT and CA-215. Debulking surgery and 6 rounds of taxol and carboplatin followeed by 1 year of maintenance on taxol. First CT after completing maintenance showed new places not seen on earlier CTs. Because the new places were near the liver I was referred to a different surgeon and he said he didn't see tumor and said I could wait 2-3 months and re-scan or if I was really worried he would do surgery then. I decided to wait b/c I wanted some time without chemo or surgery to do things, get healthy and visit with family. I re-scanned recently and the area had grown. I am seeing surgeon tomorrow and will schedule more surgery. I would be interested in any information on any trials for this particular type of cancer.

    Sorry to hear this
    I also have PPC, stage 4, and I am platinum resistant. I entered a trial that includes
    Doxil, Avastin and Torisel. I have only had one complete round so far.
    Day 1 --All three drugs
    Day 8 --Torisel
    Day 15 --Torisel
    This Friday I start the second round. Alot of times I believe the trials for peritoneal and ovarian are done the same way, they just call it ovarian. Keep us posted on how you make out in your surgery. Sending prayers for you.
    Vicki
  • Best Friend
    Best Friend Member Posts: 222
    #113
    There are people here.
    Hi- Everyone here has helped me very much. They do mark my mom's Stage 4 PPC as ovarian. I never heard of it before. She had ultrasounds, cat scans, colonoscopies. They found it very late after going in after they couldn't get through on her colonoscopy or barium enema. I am furios that they sent her for soooo many tests. By the time they found it over a year later, u wonder if they could have caught it a little earlier, it would be more promising. She didn't have her debulking first. She's supposed to have her three chemos, than surgery.
    All i want to say is, I looked on the internet on this type of cancer until i couldn't bring myself to do it any longer. I think i have become so educated i could be the oncologist's nurse. But, until I came here I thought she was definitely going to die. I know this cancer is very fatal. But so many woman have come on here and showed me that all the statistics i have studied are not going to help my mom get into remission. Yes, she may get it back shortly after, but coming here i know not only that she can keep going but all of these women have taught me that it IS possible. When i am sad, crying,watching my mom get smaller, and weaker with no hair, i want to cry but i come here and read and hope to help someone else feel a little bit better.
    Good Luck to you. I think going through this makes us realize how important the little things are that you do from day to day.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #114
    Best Friend said:

    There are people here.
    Hi- Everyone here has helped me very much. They do mark my mom's Stage 4 PPC as ovarian. I never heard of it before. She had ultrasounds, cat scans, colonoscopies. They found it very late after going in after they couldn't get through on her colonoscopy or barium enema. I am furios that they sent her for soooo many tests. By the time they found it over a year later, u wonder if they could have caught it a little earlier, it would be more promising. She didn't have her debulking first. She's supposed to have her three chemos, than surgery.
    All i want to say is, I looked on the internet on this type of cancer until i couldn't bring myself to do it any longer. I think i have become so educated i could be the oncologist's nurse. But, until I came here I thought she was definitely going to die. I know this cancer is very fatal. But so many woman have come on here and showed me that all the statistics i have studied are not going to help my mom get into remission. Yes, she may get it back shortly after, but coming here i know not only that she can keep going but all of these women have taught me that it IS possible. When i am sad, crying,watching my mom get smaller, and weaker with no hair, i want to cry but i come here and read and hope to help someone else feel a little bit better.
    Good Luck to you. I think going through this makes us realize how important the little things are that you do from day to day.

    @best friend
    I could have written the second and third paragraph of your post myself!!!!
    Mum is stage 3 ppc, and this is exactly what I was doing , until I realised it was getting me no where, what will be will be , we cannot control the outcome of this disease.
    I enjoy time with my mum so much now, every second is precious.
    oh to happy days with mums xxxxx
    Liz xxx
  • Momma Mack
    Momma Mack Member Posts: 6
    #115
    Mum2bellaandwilliam said:

    @best friend
    I could have written the second and third paragraph of your post myself!!!!
    Mum is stage 3 ppc, and this is exactly what I was doing , until I realised it was getting me no where, what will be will be , we cannot control the outcome of this disease.
    I enjoy time with my mum so much now, every second is precious.
    oh to happy days with mums xxxxx
    Liz xxx

    Prmary Peritoneal Cancer
    I was diagnosed in August 2010 by my GYN as having PPC. I had never heard of such a thing and found as many here that many in the health care profession just lump it under ovarian cancer. There is always hope and as we go on this journey we are not statistics. I am very excited to have found this...
    When I was first diagnosed the next thing out of my GYN's mouth was not to google... He put me in touch with an outstanding GYN Oncologist who also performed my debaulking surgery with my GYN. I started a blog to try and get more information out there and am sharing the link. I look forward to joining the conversation. Right now I have to run...

    http://peritonealcancerdiagnosisjourney.blogspot.com/
  • dolive
    dolive Member Posts: 1
    #116
    dooder0420 said:

    Your diagnosis
    Hi Lyla,
    I just found this page when I was searching for recurrent primary peritoneal on google. I hope you have seen the GYN/ONC by this time. I am a 3+year survivor, dx with stage 3C PPC when I was 46. I was optimally debulked and then completed 2 rounds of carbo/taxol IV then 8 rounds of taxol/cisplatin IP(intra peritoneal)chemo. I have the best GYN/ONC down here in San Antonio that use the IP treatment on me when other docs were pooh poohing it. There are several of my other chemo buddies that were also treated with the same protocal and they are still in remission also. There is certain criteria for getting IP treatment and several things have changed with treatments since I was diagnosed. Please make sure that you are proactive in your search for information about this disease, not just from the doctor but get second opinions and a third if needed. I did so just to make sure I was receiving the best treatment. Please let us know how you are doing. Take care, Dee

    SA Gyn/Onc
    Hi Dee,

    I, too, am in San Antonio and was interested in the name of the GYN/ONC you speak so highly of here in town. My Mom had peritoneal cancer and I am currently "exploring" a breast mass that I found with my current GYN. I am hoping I do not need the reference but good to have just the same....Thanks!
  • Christina_0279
    Christina_0279 Member Posts: 1
    #117
    Was just told Thursday 11/3/11 I have primary peritoneal cancer!
    Hello! I am very new at this. I am 32 year old just told has primary peritoneal cancer. The have not told me stage or treatment yet. I just found out this past Thursday! I am very scared. I have a 9 year old boy and a husband of 12 years. I don't know where to go or even what to do. Can someone point out the right path for me right now. I am in Central Illinois area. I also have what is called an interstim inplant so a MRI is total out for me. So that is where my doctor is on hold with right now. Please tell me anything right now.
  • wmcurts48
    wmcurts48 Member Posts: 2
    #118
    Hi read your post. I also
    Hi read your post. I also have peritoneal cancer. When dx in March of 2009 I was stage III. I went through extensive surgery and 6 treaments of chemo using taxol and carboplatin (spelling?)I live by the 3 F's Faith, Family and friends. I hope it helps you to know that I have gone 27 months in remission. My cancer has just returned. Keep fighting!! There are so many new drugs on the horizon. Im 62 by the way.
    Lady Madonna
  • wmcurts48
    wmcurts48 Member Posts: 2
    #119
    Hi read your post. I also
    Hi read your post. I also have peritoneal cancer. When dx in March of 2009 I was stage III. I went through extensive surgery and 6 treaments of chemo using taxol and carboplatin (spelling?)I live by the 3 F's Faith, Family and friends. I hope it helps you to know that I have gone 27 months in remission. My cancer has just returned. Keep fighting!! There are so many new drugs on the horizon. Im 62 by the way.
    Lady Madonna
  • teresa92
    teresa92 Member Posts: 1
    #120
    peritoneal cancer stage 3
    Hi,
    My mother age 58 found out in the middle of April that she has peritoneal cancer stage 3. She had surgery at the end of April and still having trouble with all this fluid building up in her pacrious and in her lungs. We are waiting for her to stop buliding up this fluid so we can start chemo. It's been so hard on me because I'm the only one who lives with her and I'm 20 years old and its been so upsetting. I live in Buffalo NY, and we being treated at Roswell Park cancer Ins.

    You are all in my prayers, take care!
    Buffalo NY
  • jamesinfantry
    jamesinfantry Member Posts: 1
    #121
    my mother

    I found out 5 hours ago my mother has peritoneal cancer, she will be going in for surgery in early March. She is going to Tuffs in Boston, from what she told me the doctor there is very good.  I do not like not knowing what to expect.  She is in her mid 60's and not in the greatest healt.  She just had surgery to take out her appendix and that is how they found it. I do not know what stage she is at or have much information because she had just got home and was very tired.  Please if there is anything I can tell her, any information that my mother and myself need to know I would be forever grateful.

    Info that I have… they will be taking out some as many of the cancer cells as they can as well as some of her colon, and will be doing a type of chemo (she said a one time chemo during surgery that fills in all the open areas around her organs)

    Please any suggestions or hope that I can give her would be wonderful

    Thank you,

    James

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