CancerCompass message board discussion started by Deborah R. on 8/21/2003 http://www.cancercompass.com/message-board/message/all,398,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom was diagnosed with Primary Peritoneal Carcinoma last march. I am having a very difficult time finding information on this type of cancer. Her doctor tells us it behaves and is treated the same as ovarian cancer. She is getting ready to have her 6th chemotherapy treatment and I am worried because her ca-125 was originally 2938 and after she had surgery and 5 chemo treatments her ca-125 was down to 91 and all of a sudden it is now up to 111. Does anyone have any information on my mom's cancer or what this ca-125 going up may mean? Deb H., MN Deborah R. Thu, 21 Aug 2003 00:00:00 GMT I know your message is a year old...but I am new to this sight. My mom was diagnosed with the same thing in December 2003. Just wanted to visit with someone that had the same situation---and basically no place to find information. Petunia Thu, 26 Aug 2004 00:00:00 GMT I just found this website. my mom was diagnoised 2 years ago with pertoneal carcinoma. she is in her 2nd year of chemo treatments. 1st year was conventional chemo and the last year she is on research treatments. Her # has fluxuated from 91 to 1700 in the last 2 years. She was told there is nothing to do surgury on, because all of her cancer is in the fluid and not in the lining or in the wall. Is there hope? Cheryl Lynn Thu, 13 Oct 2005 00:00:00 GMT Hi, my mum was diagnosed with this cancer in march 2004. She was initially given 3-6months but is still going well. Her problem is that 4 months prior to the diagnosis she suffered a massive heart attack and was clinically dead for 2 mins.Consequently she cannot have chemo, radiation therapy or surgery as her heart and kidneys are too impaired. However, she has been having regular drains. She has 4.5litres of fluid taken from her stomache every week. She is on morphine for the pain and has anti-nausea and sleeping pills for comfort. All in all she's doing ok, just slowly getting weaker. But at least her quality of life is quite good.Her problem now is her lack of appetite and she feels itchy all over.Has anyone else experienced this? Judes Fri, 06 Jan 2006 00:00:00 GMT Hi Im lorena, I wanted to know how is your mom doing? Im praying for her, I do hope she's getting better. My mom was diagnosed with the same cancer too and I cant find any informacion about it, Im so worried, please write me back and let me know about your mother, God bless you and you take care Latinagirl06 Tue, 07 Mar 2006 00:00:00 GMT My mother was diagnosed with primary peritoneal carcinoma in sept of 2005 she was started on chemo and in dec she that round of chemo was stopped to see what happened when she stopped from dec to jan fluid starting building up in abdomen and she had surgery feb 22 2006 and they took of 6 pounds of fluid and they also did a hystorectomy and her bowels had to be untangled because the cancer had wrapped around her bowels and that evidentally was the reason she was having trouble with her bowels and wasnt able to eat well she is starting a different chemo march 24 but i dont know if it will help because everything i have read and heard from the doctors is there is no cure I know this is a 2003 and three message but i hope you will respond back and tell how your mother is doing now I hope all is well sincerely tonya Tonya2000 Fri, 10 Mar 2006 00:00:00 GMT Hi Tonya B, I am sorry your mom is going through all this. This is certainly a 'mean' cancer. I say mean because it seems to just grow more aggressive when the treatments start. My mom was diagnosed in December 2003. Went through the conventional surgery and chemo. Her marker was over 1400 before surgery and by the end of her chemo it was at 87. But that was the lowest it went. She began several other types of chemo therapy. But nothing worked. In October of 2004 she began having to get the fluid drained from her abdomen because she could not take the pressure. (that draining happened like every 2 weeks.) The day after Christmas she went for a tranfusion and she got sick at the chemo center so they transferred her to the hospital. She had a bowel obstruction and the oncologist basically said there was no point in doing surgery to remove it-she would not survive it. She was in hospice for about 7 days and passed away on my parents' 55th wedding anniversary. I guess i'm telling you this because I know how frightened you may be--I've been there. You are not alone. I know there is no information out there that is good for Peritoneal cancer. But the fact that they were able to do surgery on your mom makes me think they believe she can have some quality life. Length of life, they cannot predict. But perhaps the quality of life that is left can be good for your mom. Girlfriend, I know what you and your family are going through. I will keep you in my prayers and will be here to "talk" if you need! You take care of yourself and love your little mom with all your heart! Petunia in Texas Petunia Tue, 14 Mar 2006 00:00:00 GMT hi my mum was diagnosed with primary peritoneal cancer today many of you know on here it hits u like a brick. she was rushed into hospital last tuesday with abdominal pain and fluid in her stomache its took them a week to find out what it was.she was drained for 5 days but had to stop or she could get infected. she was told today about her chemo treatment which will start tomorrow.they wont send her home until the fluid slows down.they say that if she doesnt have this treament she will die very soon in amatter of months or weeks.im terrified i havent heard anyone say that they have survived this or anything yet ? im scared of what will happen ,what to expect?i know alot are in same boat and be good to talk to people who are going through the same.anyone got any advice for me? im going out of my mind! Kazzam1979 Thu, 30 Mar 2006 00:00:00 GMT I have found this board to be very helpful in my quest for the answer to my health problems. I unfortunately think this cancer may be a possibility for me. I cant seem to get an answer from doctors other than "well, that's just the way it is...." or "it cant be anything, you dont have anything left". In any case, what really got to me was someone asking me when I was due the other day. I have gained weight TERRIBLY since my ovaries were removed, but most noticably in my abdomen. Also, my stomach hurts often, I have diahrrea all the time, I stay fatigued, and most recently, I am having the MOST horrible hot flashes. It has been almost 2 years since the surgery, and I have never had hot flashes like this. Can anyone tell me a little more about the symptoms? And is your stomach hard or soft? (sometimes mine is hard, other times just feels like fat) The upset stomach episodes are violent sometimes. I would appreciate any help as everyone seems to be a wealth of information. What worries me MOST is the odd coincidences leading to this. I just began a brand new job, a fellow trainee is the one that asked me when I was due, (which upset me greatly)an e-mail was sent to me today by a former co-worker on this cancer that I have never heard of before (and I havent talked to her in a year, so she doesnt know any of this) and the most coincidental and scary fact of all: My new job is with a Hospice Agency. I am terrified. Drssayimnuts Wed, 10 May 2006 00:00:00 GMT Hi...I'm sorry to hear about your mum. My mom was diagnosed 5 years ago with primary peritoneal cancer, so I've been in the same boat you're in now. My mom passed away almost two months ago, so I'm now in a new boat and dealing with all of the emotions that go along with it. I was close with my mom, as it sounds like you are. I was wondering how you and your mum are doing. I am grateful to have been able to spend as much time with my mom as I did. She was a courageous woman, and we all need to be that way when it comes to this disease. I hope you get this message. Carols Daughter Sat, 24 Jun 2006 00:00:00 GMT what is happening with your mom? my mom was just diagnosed and we arent sure if chemo is the best route? what did you guys do and what stage was she diagnosed at? Bondra Mon, 17 Jul 2006 00:00:00 GMT My mother was diagnosed with primary peritoneal carcinoma back in 2000. She had surgery and chemotherapy in 2000 and was healthy for the last 6 years. Unfortunately, they just discovered a new tumor so we're going through this again. She really doesn't have any symptoms at this point, they seem to have caught it fairly early this time. We are optimistic. The only advice I have is to hang in there and be optimistic. My mother had a good five years and we're hoping after this next round of chemo she will have more good years. Best wishes. Annie2 Thu, 20 Jul 2006 00:00:00 GMT Hi--I'm 55, and was diagnosed November 2004 with primary peritoneal cancer with metastasis to bowel and ovaries. Had uterus,etc. and omentum removed, and 6 monthes of carboplatin and taxol chemo. I have now been "clear" for 14 monthes, ca125 3, good CT scans. Yes, this is a mean cancer, hard to see on CT scans, so I still worry no matter what.Please, please, don't tell your Moms to "think positive"---let them talk and talk and express everything--pretending to be positive to make other people feel better only adds to the cancer patient's stress level. I'm lucky my husband just let me talk and talk about my fears and anger and whatever I needed to say. Be a good pair of ears and of course, show your love. Carol in CT PS I'm a stage 3B Poodlecamper Sat, 22 Jul 2006 00:00:00 GMT Hello, I am sorry to hear of your loss and hope you are doing well under the circumstances. My mother was diagnosed a two days ago with Primary Peritoneal Cancer. She was not feeling well and had a couple of MRI's which revealed a tumor. They initially thought it was a slow growing form of cancer but a few days later she started accumulating fluid outside of her lungs and had great difficulty breathing. The fluid was drained and it revealed cancer cells which were also confirmed at the same time with biopsy results. This form of ovarian cancer came as a surprise as she had a Hysterectomy thirty years ago unrelated to cancer. Untreated they said she would only have a few months. She started Chemo treatment yesterday with Taxol and Cytoplatin. We hope with the treatment she has a few more years of quality life & your posting gives me hope since your mom had five years. Bobbyjean Thu, 17 Aug 2006 00:00:00 GMT im not sure if everyone has the same symptons so i apologize if i am in the wrong section. I just got the phone with my mom who is a registered nurse and she has had a hystectomy(bad spelling) 20 years ago and just the other day she thought she had a boil in her vagina and she was having alot of pain, she went to emergency and they found a very large tumour inside her cervix and it extends into her bowls,they took a bioppsy and it came back cancer.She just had a colonospocy ( again bad spelling) and they removed another piece for a biopse. My mom told me that she had perineam cancer but she still is waiting for resulte for the colon biopse and she is going for a cat scan middle of sept.. So my question to everyone out there is this a similar scenario? i think mom is holding back info that is why im here...any advice is appreciated, please exscuse the grammar im alittle teary eye.. ps mom is 63 thank you all and god bless Van_canucks Fri, 01 Sep 2006 00:00:00 GMT I see that this message was from back in March. My mom was diagnosed with this horrible cancer about 6 weeks ago. She stayed in the hospital for 5 and half of those weeks after they did exploratory surgery. She just passed away last Tuesday. This is a horrible horrible cancer that apparently has no treatment to even stop it, once it gets started. My mom was 45, she was an avid tennis player and very healthy. She started complaining around the end of May that she was hurting but couldn't see a doctor until the end of July. After she was given many tests they had to do surgery to have it sent off to figure out what it was. I had never heard of this cancer till the middle of August. My mother passed away with in weeks after she was diagnosed. I think that more doctors should focus on this type of cancer and find a cure. It scares me because my grandmother has a very unusual bone cancer and now my mother has this and died from it. I think that there should be some kind of cancer group started just for this, and see if there can not be money raised for it or something started for more research!!!!!! Let me know if anyone agrees! Racheld23atjsu Wed, 13 Sep 2006 00:00:00 GMT Hi, I was just reading the messages and wanted you to know that you're not alone. Last March 2006 it was discovered that I have this cancer too, that acts & is treated like ovarian cancer. I had a complete hysterectomy 22 years ago so I thought I didn't have to worry about any of that stuff. Anyway, I was working outside of the home and enjoyed being active, walking my shepherd/mix dog, taking care of the yard work. I too kept getting fatter and fatter and my belly kept getting bigger no matter what I did or didn't eat. Felt like I was just getting old and fat. Meanwhile we purchased a house up in the mountains as my husband had just retired. My family doctor sent me for a heart test only to learn that my heart is good. The day before the movers arrived, I went to the ER where they discovered what was wrong with me. They ran all kinds of tests on me and drained 2 ltrs of fluid out of the pluera (the lining around the lungs.) In this fluid they found the cancer marker CA-125 was at 350. In our new location I have a wonderful oncologist I have gone through 6 chemo cocktails of the platinum based chemo, but the cancer found its way around it. Now I've had 2 cocktails of Doxil and I feel great! After telling you all of this, please don't give up! Find a doctor that will give you a blood test to check your blood marker CA-125. I pray the Lord isn't ready to take me home yet. Karen s Wed, 27 Sep 2006 00:00:00 GMT I was originally DX 8/1/05 with OC Stage IV. Turned out to be PPC. Had 6 chemo sessions prior to 1/23/06 surgery and 4 more after surgery. In May we saw no signs of cancer so I assumed I was in remission. Had a great summer celebrating my new life, new hair, new attitude, etc., etc. Last month began having that old bloating feeling again, just around the time I had a colonoscopy (clean!). Called my Doc who I absolutely adore, and was advised to get a CA125, pronto. Numbers came in at 161 (damn!) so I'll be having a CT asap to see what's going on. Anyway, I've been really down in the dumps and pretty scared, too. I have been a fighter throughout the ordeal; everyone told me my positive attitude has been one of the the strongest they've ever seen. The problem is, I want to see/read/hear more about survivors of PPC. I never thought that would be so difficult as I didn't realize how rare a cancer this is. I'm somewhat relieved to find other sisters who share my pain and I truly hope to hear more stories of survival. Soxfanjan Tue, 03 Oct 2006 00:00:00 GMT Just read all of your messages and am so thankful to have found this board. Thanks for all of your posts. It really is hard to find much information on this cancer. My mom has PPC too... was diagnosed spring of 05. After surgery to remove her omentum she had an AWFUL few weeks in the hospital and then had to go back after she caught a bad infection following the first chemo treatment. Anyway, she made it through the six months of chemo and got back to a good standard of living... then I guess it was sometime this summer she started having trouble again... and has tried two different chemos this time... which don't seem to be helping... she keeps getting that fluid build up. About six weeks ago she had 4 litres drained... and then this week she had about the same drained. I guess one thing I'd like some more information on... or to hear your experiences... is once this fluid build up starts... can anything stop it? Will it just get more frequent? It seems so awful... what happens next??? This is a really mean cancer... and it has shown us how strong our mom is. She battled an unrelated breast cancer back in 04 only to have this pop up on 05. Its very strange to me that she got two cancers... and the drs say they are completely unrelated.... like getting hit with lightning twice. So anyway I just feel so bad for what she's having to go through and wish there was some better treatment for this one!!! I'm with whomever suggested we need to raise awareness of PPC. It is so closely related to one type of ovarian cancer... so maybe we could team up with them... Curlylocks Wed, 04 Oct 2006 00:00:00 GMT Wow, although I'm happy to have found this message board, I am disheartened by the recurrence rate of PPC. My mom was diagnosed 3 months ago after being misdiagnosed with diverticulitis. Her CA125 was over 2000! She had a complete hysterectomy and is now on chemo that is put into her body through a general port and one that goes straight to the peritoneum. Her oncologist has given her a good prognosis, but now I'm not sure if he is being completely realistic? She is having a hard time on the chemo, and I don't think she'd be willing to go through this again if it doesn't permanently kill the cancer. Where can we go to find true survival statistics?? Everything online seems so out of date or vague. Cynthwad Thu, 05 Oct 2006 00:00:00 GMT I totally agree with you in that telling patient to "think positive" is not the answer for someone dealing with a terminal illness!! They DO need to talk and vent, and find a forum to deal with this "end of life" stuff that no class or family teaches you on how to deal with. This is HUGE STUFF HERE!! If the family and friends close to the patient can't handle it, then it's not the burden of the patient...it's their burden, and they need to find a healthy outlet to get help in expressing their pain and suffering too (there are wonderful support groups for this, and everyone should join). It's hard for EVERYONE...but please don't put the burden back on the one suffering the disease. They often try to "hide" most things from direct family because they know how painful it is, and that they are not prepared to deal with it. Take this time and deal with it for what it is...something unique and different, and not meant to be handled the way you always handle everyday crisis and things. Also prayer works miracles..pray with the family. Julie p Thu, 26 Oct 2006 00:00:00 GMT I wrote earlier, my mom has been battling since being diagnosed in early August at the age of 79. Soon after the biopsy the fluid started, they drained a couple of liters with a needle, it came back in a week or so and they inserted a chest tube, she spent the next 10 days in the hospital and was discharged to a rehab factility. In two days she was back in the emergency room with fluid building up again and extreme trouble breathing. They inserted a 2nd chest tube and she spent the next two weeks in the hospital until the fluid stopped. Her first chemo treatment with Cysplatin & Taxol did not work and they put her on a different type of chemo treating her once a week two weeks in a row and with a week off then repeating the cycle. Unfortunately the Cysplatin & Taxol made her hair fall out did not work. The new chemo has allowed her to keep what hair remained. I am happy to report the fluid has not returned for at least 5 weeks, but she has lost alot of strength and has good days and bad days in a rehab facility. Bobbyjean Fri, 27 Oct 2006 00:00:00 GMT My mother was diagnosed in July 2000 and passed away in February 2003. She responded well to chemo and had a good quality of life until she was rushed to the hospital with weakness in her limbs,etc. Her cancer metastized to her spine(cervical)which I've been told isn't typical. She underwent radiation and died 4 weeks after being admitted to the hospital. It's been over 3 years since she died but it's obviously still very much on my mind -- the obvious reason is that it can be 'inherited' and even though I've been tested and don't have the common BRCA 1 or 2 there are probably many more genetic markers still out there. I had had my ovaries removed (unrelated)right before my mom's diagnosis and it was really a hard hit to find out that there was something 'worse' then ovarian out there. I wish you all well and keep in mind that 'miracles' do happen. Sherylcfo Wed, 01 Nov 2006 00:00:00 GMT my mom was just diagnosed 3 days ago with this disease. She had surgery and is supposed to start chemo. I am trying to find out if there are any specialists in this area, or should she stick with the doctors recommended at her hospital. We are in the New York area. Good luck and best wishes Bellabb Sun, 05 Nov 2006 00:00:00 GMT My mother has PPC and has just finished chemo after primary debulking (surgery). To the person who posted immediately before me, you live near one of the very finest cancer treatment centers in the world - if it were me I'd go to Sloan Kettering. Drdave Tue, 28 Nov 2006 00:00:00 GMT  On 7/22/2006 Poodlecamper wrote:Hi--I'm 55, and was diagnosed November 2004 with primary peritoneal cancer with metastasis to bowel and ovaries. Had uterus,etc. and omentum removed, and 6 monthes of carboplatin and taxol chemo. I have now been "clear" for 14 monthes, ca125 3, good CT scans. Yes, this is a mean cancer, hard to see on CT scans, so I still worry no matter what.Please, please, don't tell your Moms to "think positive"---let them talk and talk and express everything--pretending to be positive to make other people feel better only adds to the cancer patient's stress level. I'm lucky my husband just let me talk and talk about my fears and anger and whatever I needed to say. Be a good pair of ears and of course, show your love. Carol in CT PS I'm a stage 3B My mom was recently diagnosed with peritoneal cancer.  She had surgery for breast cancer in Sept.06 and routine ct scan after showed 2 small tumors in the peritoneal cavity of left upper quadrant.  The biopsy confirmed peritoneal cancer.  What a whirlwind of emotions, she has felt no symptoms leading up to this diagnosis, so we hope our time with her is long.  Next week we will be meeting with her oncologist and then gynecologic oncologist, it is of comfort to find others who are experiencing this.  I will pray for all.  My mother is already telling us that we need to be srong for her and that she has some legal issues that she needs to take care of. We will take your advice and let her talk about her grief and anger as she feels and not smother her in positivity that we are unsure of.  We will just continue to smother her with all of our love.  thanks for listening. Lynnymg Thu, 14 Dec 2006 00:00:00 GMT  On 11/5/2006 Bellabb wrote:my mom was just diagnosed 3 days ago with this disease. She had surgery and is supposed to start chemo. I am trying to find out if there are any specialists in this area, or should she stick with the doctors recommended at her hospital. We are in the New York area. Good luck and best wishes Hi!  My mom has just had surgery for the same cancer.  She starts chemo this week.  I tried to get my mom to get a second opinion but she hasn't.  I am also in the NY area and was wondering how things were going for you.  Andiebearie Tue, 19 Dec 2006 00:00:00 GMT Hi,  My mother had problems with fluid in her abdomen.  I believe they were draining 5 L.  After her exploratory surgery she had intraperitoneal chemo (cisplatin) and so far the fluid has not returned.  They put the drug into her abdomen via a port and kept it there for 4 hours (she rolled into different postions every 30 min.) then after 4 hours they begain removing it via gravity drain.  She was draied once after this treatment and since then the fluid has not returned -- its almost been 3 months.  Prior to this she was being drained about every week.  I'm not sure if this works for everyone and I don't know if her results will last.  But I hope this gives you some more info. Chrisj Sun, 31 Dec 2006 00:00:00 GMT hi, my name is lestine, stine for short, i just read your message, i'm new to this ppc, as of yesterday, was told i had ovarian cancer, now he, {doc} says he "never" told us that! i am so happy to have found this page today, i really need to  talk with someone other than my family and paster, anyway, i found a site that suggest herbal meds. that help "heal" cancer, right now i'm drinking oloe vera gel for the stomach, only been taking for a week, i know ole vera is good for "everything " that bothers you, it is a natural herbal product. now i'm gonna try this "cellular zeolite, found it on line this morning, can't remember the site, just look up the word! you should get some information from there. good luck, if i find it again, i'll let you know where to look, good luck and god bless. stine Stine59 Sat, 13 Jan 2007 00:00:00 GMT hello, i'm new here, today i just found this site, yesterday i just found ou about this cancer, i was told i had ovarian cancer, now he, {doc} claims he never told us i had ovarian cancer, yet i had my ovaries removed in 2005, somebody told us this. well i'm happy to know i have found someone to talk with, it's really been a problem to deal with, he's now telling me my chances are running out, but i have faith in "god", and that's how i've been making it. i'm gonna try some hebals now, have found some that is suppose to really help, i'm drinkig aloe gel now, which i know is good for everything! god bless and hope your mom feel ok, stine, please write back! Stine59 Sat, 13 Jan 2007 00:00:00 GMT From what I have learned, Breast Cancer is related to Overian Cancer and if three members of the same family have one or the other, it can be genetic.  My sister had breast cancer twice (5 years apart), and I was diagonised with PPP in October, 2005.  I had the genetic testing done, and it came back that at this stage mine isn't genetic.  I also had the fluid (my only sympton), and had 2 ltrs. drained, then the hysterectomy, and six chemo treatments.  My CA125 reached 1128 before the surgery.  When the six chemo treatments were finished my Oncologist said that he wanted me to do 6 months maintenance, and the day I thought was to be the last treatment he told me, now I want you to do six more chemo treatments.  I have two left to go and my CA125 os consistently down between BELOW 0 AND 2.  I feel and look great and they are telling me that I should have a long remission.  I am never sick or tired.  Since the day I was diognosed I have been taking 2 ozs. of Noni, Mangasteen and Polmogrante juices (all bought at Costco), and la iquid vitamin. I also drink 2 ozs. twice a day of Flor Essence Tea bought at Health Food Stores, but a lot cheaper on internet.  I get it from Dr. Trust.  Nan07 Wed, 17 Jan 2007 00:00:00 GMT  On 8/17/2006 Bobbyjean wrote:Hello, I am sorry to hear of your loss and hope you are doing well under the circumstances. My mother was diagnosed a two days ago with Primary Peritoneal Cancer. She was not feeling well and had a couple of MRI's which revealed a tumor. They initially thought it was a slow growing form of cancer but a few days later she started accumulating fluid outside of her lungs and had great difficulty breathing. The fluid was drained and it revealed cancer cells which were also confirmed at the same time with biopsy results. This form of ovarian cancer came as a surprise as she had a Hysterectomy thirty years ago unrelated to cancer. Untreated they said she would only have a few months. She started Chemo treatment yesterday with Taxol and Cytoplatin. We hope with the treatment she has a few more years of quality life & your posting gives me hope since your mom had five years.Hello,I am new to this site and wish I would have known about it a long time ago.  I am a four year survivor of ppc.  I would like to know how your mom is doing now?   My prayers are with you and try and keep a positive attitude.  I think that is the only thing that helped me make it through, besides my family.  Let me know how she is doing and if you just need to talk, I would be glad to listen.Wendy  Wendymoo Thu, 18 Jan 2007 00:00:00 GMT  On 7/20/2006 Annie2 wrote:My mother was diagnosed with primary peritoneal carcinoma back in 2000. She had surgery and chemotherapy in 2000 and was healthy for the last 6 years. Unfortunately, they just discovered a new tumor so we're going through this again. She really doesn't have any symptoms at this point, they seem to have caught it fairly early this time. We are optimistic. The only advice I have is to hang in there and be optimistic. My mother had a good five years and we're hoping after this next round of chemo she will have more good years. Best wishes.HI Annie2,Can  I ask you where the tumor was located and how they found it?  How is your mom now?  Are they giving her the same type of chemo again?I am a four year survivor of ppc but have been having some weird symptoms although all of my testing has been normal.  I am getting ready to have some ct scans done but I don't rely heavily on that test because it is very deceptive.  They were clear when I was diagnosed and thank god I had an aggressive oncologist who opened me up.....hence I am still here because of her.Thanks for any information you can give me about your mom,  You are in my thoughts and prayers.Wendy  Wendymoo Thu, 18 Jan 2007 00:00:00 GMT Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great   Too Young Fri, 19 Jan 2007 00:00:00 GMT  On 1/19/2007 Too Young wrote:Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  Hello too young,Sent you a private message a couple of days ago...been thinking about you..how did your first chemo treatment go?  Let me know when you come back online and I will be happy to chat with you.  Hang in thereWendy Wendymoo Thu, 25 Jan 2007 00:00:00 GMT My mom was diagnosed with Primary Peritoneal Carcinoma (stage 4) on June 28, 2006. For a year prior, my mom had symptoms similar to someone with irritable bowel syndrome or an ulcer.  She had stomach pains, constipation, and towards the end of May 2006 and until her diagnosis, started to have rapid weight loss, fluid build up in her abdomen and fatigue.  For the year prior to her diagnosis, she had CT scans, ultrasounds, endoscopy's, pap smears, you name it.  All of those tests came back clear until June 28th.  They decided her course of treatment would be chemotherapy.  She was so weak and frail.  They put in a mediport on Friday, July 14th, and that Sunday on July 16th she was put in the hospital, because she got a blood clot in her arm from the mediport.  She was in the hospital and while in there was in excruciating pain.  She was vomiting what looked like coffee grinds and couldn't really eat.  On Wednesday, July 19th, I spent the day with my mom in the hospital and she was vomiting, in pain, lethargic, you name it. They took her for an x-ray to make sure her bowels weren't twisted..they weren't.  That evening we got a phone call saying she was having trouble breathing and she was being taken to the ICU, my mom died at 2:25 a.m. on July 20th., because of a pulmonary embelism  My mom was 58 years old and was diagnosed only 3 weeks earlier.  My mom also only saw her newly born granddaughter for 2 and a half weeks (she was born on June 30, 2006).  I am so angry at this disease.  I am so angry that it is so mean and not easily detectable.  I am so angry that I'm 28 years old and my mom is dead, especially when I need her most.  I am so angry that this disease isn't being researched as much as it should be.  Is there a foundation or something where we can advocate and raise money for research???  This cancer MUST have research. It's mortality rate is very high.  I feel like I need to do something for my mom....for her memory and for the lives of others living with this awful mean disease!Thank you for listening,Kelly Kellbell529 Mon, 29 Jan 2007 00:00:00 GMT Hi Kelly,I am so, so sorry to hear about your mom.  I can't even begin to tell you how you must be feeling right now.  I am a four year survivor of this disease and everything you have said is absolutely true.  I don't know if there is any research going on out there honey.  I had no symptoms either.  I  guess I was just lucky that I was diagnosed early enough to be treated.  I too, had ct scans and blood work and everything came back normal.  I was lucky enough to have a great surgeon who was aggressive with her treatment and I am still here.  I try to find research being done and I can't find anything so far.......I am sure if you have been reading any of these messages you will find that we are all in the same boat.Keep you chin up Kelly...I am here if you want to chat.  Take care of that sweet baby of yours.... Wendy  Wendymoo Tue, 06 Feb 2007 00:00:00 GMT Wendy,Thank you for your nice message.  I just feel I need to do more for this disease.  I am so happy though that you are a four year survivor...that is wonderful!!!!  What were your symptoms, etc.?  Where are you from? Are you cancer free as of now?  What did they do for you after you were diagnosed?I wish that I had the money to start a foundation for PPC...it's a shame that it is just not looked at as much, especially since it is becoming more common. My sister and I are going on Monday to see a hematologist/oncologist, because from what research I have seen, I have learned that there are 2 genes in your body that may put you at greater risk for developing PPC or ovarian cancer.  We are meeting with this doctor to get further information and for his input on my mom's death/diagnosis.   I am so grateful that there are people like you who can lift spirits when needed......I am still so angry though and feel so cheated.  I had a wonderful relationship with my mom (probably better than most mothers/daughters).....she was my life...and we had so much fun together.  It's hard to accept it at all and it seems like each day is getting harder and not easier.  I am on medication and see a therapist to help and that does...but it's hard to come to the realization that my mom is dead.  Thank you again! Kelly  Kellbell529 Mon, 12 Feb 2007 00:00:00 GMT I'm so inspired to hear your story Kelly and from those of you that have lived with this cancer for some time.My sister (42) was diagnosed with PPC in December 2006.  On the Thanksgiving prior her abdomin filled up which is how they detected her cancer.  She started treatment at the end of December and had two ports - one close to her heart and the other in her abdomin.  She finished her treatments in June 2006 but soon after her numbers started to climb.  When she finished chemo in June her CA125 was 6.  Then she started getting fluid in her lung lining so she had surgery last week where they created scar tissue to form around her lung so the fluid would not return.  Thankfully, she has not had the fluid return to her abdomin.  Tomorrow she meets with her doctor to plan her new treatment plan.Since our mom died in 2004 of stomach cancer I can't stand the thought of losing my oldest sister (I'm the middle) but we remain positive.  It is dreadfully painful to see what they have to go through.Today I met with a genetisist (sp?) and they want my sister to be tested for BRCA 1 & 2 - which my sister agreed to.I'm so happy to have found this site and thought I would share my story.Best of luck to everybody - you'll all be in my prayers.  Kelly Kelrunran Wed, 21 Feb 2007 00:00:00 GMT I apologize Kelly - I meant that I was inspired by Wendy.  Kelly Kelrunran Wed, 21 Feb 2007 00:00:00 GMT My mom was diagnosed with ppc.I do have to tell you all that thinking positive is what helps them get through this. Yes let them cry on your shoulder and be there to lend an ear and listen to everything they have to say. No matter how small or how big listen that is what will help. Not judging them or giving them false hope but being there and being supportive.It has been proven that a patient that has a good outlook on their condition and thinks positive lives longer and has a better outcome. They feel better as well. From what I understand there have not been any survivors. The out come is grim. But they are coming up with new treatments all the time. Enjoy the time and pray with them but keep them positive and feeling as good and as positive about their situation as you can. My mom is a fighter and is determined to prove the doctors wrong and make history. This is the attitude that helps her. There is slim information on this issue. Because it is so rare the sites that do have information on this issue all report pretty much the same thing. Looking up just peritoneal cancer usually brings up quite a few links. Also calling a cancer center helps too. Kssfrmnangl Tue, 27 Feb 2007 00:00:00 GMT Yes I agree that something needs to be done so that research is funded for this certain area of cancer. I know that you can personally start up a foundation yourself. I would like to help so if you come up with any ideas let me know and we can talk further. My mom was just diagnosed as well and has just had surgery and will be starting her chemotherapy in 5 days. So please let me know. I am very sorry to hear about your loss. Just know that you are in the thoughts and prayers of a lot of people that share this same hardship and that you are not alone. Hi, I am Shanna's mom. I was diagnosed with PPC Nov. 2006.The beginning of stage 4.I had the weight loss,the fatigue and the constipation. I had radical surgery Jan. 2007 they also took out 6" of my colon.I am a fast healer normally but this time it took longer to to heal. Now that I know what is wrong with me I  am noticing the symptoms and can monitor what is going on The only reason I was diagnosed when I was, was because I had to have my gallbladder removed. Otherwise I would not have known. I am going to fight this with everything I've got. I'm even going into an experimental study. If the study doesn't help me, I am hoping it will help somebody else. The doctors gave me 2 years to live, so to me that means I have at least twenty years!!!! All I can say to those who have PPC or those who are on the sidelines. The doctors don't know everything. How you think and how you deal with it is most of the battle..  .       Kssfrmnangl Tue, 27 Feb 2007 00:00:00 GMT  On 2/12/2007 Kellbell529 wrote:Wendy,Thank you for your nice message.  I just feel I need to do more for this disease.  I am so happy though that you are a four year survivor...that is wonderful!!!!  What were your symptoms, etc.?  Where are you from? Are you cancer free as of now?  What did they do for you after you were diagnosed?I wish that I had the money to start a foundation for PPC...it's a shame that it is just not looked at as much, especially since it is becoming more common. My sister and I are going on Monday to see a hematologist/oncologist, because from what research I have seen, I have learned that there are 2 genes in your body that may put you at greater risk for developing PPC or ovarian cancer.  We are meeting with this doctor to get further information and for his input on my mom's death/diagnosis.   I am so grateful that there are people like you who can lift spirits when needed......I am still so angry though and feel so cheated.  I had a wonderful relationship with my mom (probably better than most mothers/daughters).....she was my life...and we had so much fun together.  It's hard to accept it at all and it seems like each day is getting harder and not easier.  I am on medication and see a therapist to help and that does...but it's hard to come to the realization that my mom is dead.  Thank you again! Kelly Hi Kelly,I am so sorry for your sadness.  I still just can't imagine what your life must be like right now without your mom.  It sounds as though you both loved each other very, very much.  I know you are angry as you should be.  Please make sure you get the genetic tests.  I need to get them done as well for the sake of my own children.  Let me know what your outcome is from those tests.  Stay with the therapist as long as he/she is helping you.  Death of a parent is so hard especially when you are young.  Please try and get up everyday and think of something that your mom did for you that made you happy.  She would want that for you.  You absolutely must go through the grieving process but in the mean time, try to think of the good and happy times that you had with your mom.  She will always be with you in spirit honey and will always be looking out for you in her own way.  I truly believe that.If you would like to email me, please feel free to do so honey.  My email is wendyleemoo@yahoo.com.  I look at my emails everyday and if you just need to blow off some steam, I will be here for you,By the way, I live in Maryland right now.  I am 47 years old and I am a flight attendant for Southwest Airlines.  I have two kids, a girl that is 25 and a son that is 23.  They are my life and they have had to go through this with me as well.  It was extremely hard for my son.  He was in constant denial.  Sometimes I think he still is.  However, my daughter and I talk about this subject a lot.  She was my biggest advocate through this whole process.  She, like you, was very upset by the lack of information on this disease.  She and I have always been very close and I believe that this brought us closer together.  I am sure she will tell you that she was also very scared.  I lost my marriage over this as my husband could not cope or deal with a sick wife.  But in the long run, it was a bad marriage anyway and I am so lucky to have a second chance at life.  I have learned that you must live everyday like it is your last....just like Tim McGraw says ha ha.....Where are you from Kelly?  tell me a little about yourself and your family.  I would love to hear about your mom so feel free to write me and tell me anything you like.  Keep her spirit alive Kelly!!!!Hope to hear from you soon.  Keep that chin of yours up.......Wendy Wendymoo Wed, 28 Feb 2007 00:00:00 GMT My 84 year old mother was diagnosed with ppc four years ago.  She was stage three when the cancer was found and had surgery.  She has had one summer without chemo.  Otherwise she has been going from one drug therapy to the next until her numbers start going up again.  She is being treated by a gynocological oncologist which I would recommend.  I just came across a March 16, 2007 article in the New Zealand Herald (nzherald.co.nz) covering new research published in two peer-reviewed journals, The Journal of Leukocyte Biology and Free Radical Biology and Medicine, about the role of vitamin c  in controlling cell activity throughout the body, namely cancer cells behave like normal cells that are deficienct in vitamin c.  They are studying  to see if vitamin c might make a difference in outcomes. My mother's latest chemo has stopped working and her numbers have doubled in a month--3950--so I am on my way home.  She'll be drinking all the organic orange juice I can get her to take.   From what I've read, having your ovaries removed does not protect a woman from ppc.Paulabeth Paulabeth Wed, 21 Mar 2007 00:00:00 GMT  On 3/21/2007 Paulabeth wrote:My 84 year old mother was diagnosed with ppc four years ago.  She was stage three when the cancer was found and had surgery.  She has had one summer without chemo.  Otherwise she has been going from one drug therapy to the next until her numbers start going up again.  She is being treated by a gynocological oncologist which I would recommend.  I just came across a March 16, 2007 article in the New Zealand Herald (nzherald.co.nz) covering new research published in two peer-reviewed journals, The Journal of Leukocyte Biology and Free Radical Biology and Medicine, about the role of vitamin c  in controlling cell activity throughout the body, namely cancer cells behave like normal cells that are deficienct in vitamin c.  They are studying  to see if vitamin c might make a difference in outcomes. My mother's latest chemo has stopped working and her numbers have doubled in a month--3950--so I am on my way home.  She'll be drinking all the organic orange juice I can get her to take.   From what I've read, having your ovaries removed does not protect a woman from ppc.Paulabeth I just want to add that you should consult with your doctor before taking any supplements as they can interfere with drug therapies; for example, blood thinners and vitamin c can be a problem.  Some nutritional supplements interfere with certain chemotherapies.   So, again, check with your doctor.  Paulabeth Paulabeth Thu, 22 Mar 2007 00:00:00 GMT  On 10/3/2006 Soxfanjan wrote:I was originally DX 8/1/05 with OC Stage IV. Turned out to be PPC. Had 6 chemo sessions prior to 1/23/06 surgery and 4 more after surgery. In May we saw no signs of cancer so I assumed I was in remission. Had a great summer celebrating my new life, new hair, new attitude, etc., etc. Last month began having that old bloating feeling again, just around the time I had a colonoscopy (clean!). Called my Doc who I absolutely adore, and was advised to get a CA125, pronto. Numbers came in at 161 (damn!) so I'll be having a CT asap to see what's going on. Anyway, I've been really down in the dumps and pretty scared, too. I have been a fighter throughout the ordeal; everyone told me my positive attitude has been one of the the strongest they've ever seen. The problem is, I want to see/read/hear more about survivors of PPC. I never thought that would be so difficult as I didn't realize how rare a cancer this is. I'm somewhat relieved to find other sisters who share my pain and I truly hope to hear more stories of survival.Just curious as to how you were doing and feeling.  My mom was diagnosed with ppc stage 3c.  The doctors were unable to remove the tumor under her transverse colon, but did do a hysterectomy and he stated her abdominal area was full of cancer cells.  She starts chemo this week with Taxol and Carboplatinum.  We are just hoping for some good time after this chemo course.  Keep up your positive attitude, I am trying to help my mom find hers.  Lynnymg Tue, 27 Mar 2007 00:00:00 GMT HiI am new to the site.have primary peritoneal cancer.Just finished Chemo and except traces of activity in ascar area PET scan was clean.I have a question- does anybody knows how long the scars are painful? I can not help being scared when I have similar pain in a similar place after PET scan. Nexttme doctor wants to see me is 3 month. Is it too long to wait?How was it with you? Ewita Wed, 28 Mar 2007 00:00:00 GMT I am a 49 year old female who was diagnosed with primary peritoneal carcinoma last September and have had 7 chemos with 1 more to go.  I also had surgery in January to remove my omentum, ovaries and uterus etc.  My CA 125 started at 3400 and is now 18 after the 6th chemo (results not back from the 7th yet).  My CA 125 jumped after my surgery and my oncologist said this was very normal that it normally jumps after surgery.  It went right back down after the next chemo.Linda W Linda w Tue, 03 Apr 2007 00:00:00 GMT My Mom was diagnosed 3 weeks ago and had surgery, removal of spleen, she had a historectomy 25+ years ago, and also has a illiostomy.  She is been determined to have PPC and is a stage 4.  What stage was yours classified as?  If you have any insight for me please let me know.  I am 300 miles away from her and I hate not being there all the time.  Luckily my father is taking good care of her.  Any specific questions you would recommend me asking her doctors to gather more information? Thanks and I will keep you and your family in my prayers. Keith G Keithp Wed, 04 Apr 2007 00:00:00 GMT I was diagnosed with stage 3.  The chemo mix I was given was carboplatin and paclitaxel.  I was also given dexamethazone and ondansetron (for nausea after).  I hope your mom is not feeling any pain and can get chemo started soon. Linda w Wed, 04 Apr 2007 00:00:00 GMT I have just found this site and want to share my story with everyone.  My mother was diagnosed with PPC in 2001 at the age of 70.  She went through a course of chemo and has been without symptoms since, although her CA 125 (as low as 25 when she completed chemo) has steadily climbed these past six years.  She has had regular blood tests and CT scans every 4 months.  Recently her CA 125 more than doubled from 800+ to 1700+ since her last test.  Today she had a CT/PET scan and we are awaiting the results.We know that she responded to chemo the first time and are optimistic that she will respond again.  The doctor says there are at least three new chemo therapies that have been developed since her last treatment.I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available.My thoughts are with all of you dealing with this dreadful disease and those who have lost loved ones to it.Holly Daughterofduree Fri, 06 Apr 2007 00:00:00 GMT  On 1/29/2007 Kellbell529 wrote:My mom was diagnosed with Primary Peritoneal Carcinoma (stage 4) on June 28, 2006. For a year prior, my mom had symptoms similar to someone with irritable bowel syndrome or an ulcer.  She had stomach pains, constipation, and towards the end of May 2006 and until her diagnosis, started to have rapid weight loss, fluid build up in her abdomen and fatigue.  For the year prior to her diagnosis, she had CT scans, ultrasounds, endoscopy's, pap smears, you name it.  All of those tests came back clear until June 28th.  They decided her course of treatment would be chemotherapy.  She was so weak and frail.  They put in a mediport on Friday, July 14th, and that Sunday on July 16th she was put in the hospital, because she got a blood clot in her arm from the mediport.  She was in the hospital and while in there was in excruciating pain.  She was vomiting what looked like coffee grinds and couldn't really eat.  On Wednesday, July 19th, I spent the day with my mom in the hospital and she was vomiting, in pain, lethargic, you name it. They took her for an x-ray to make sure her bowels weren't twisted..they weren't.  That evening we got a phone call saying she was having trouble breathing and she was being taken to the ICU, my mom died at 2:25 a.m. on July 20th., because of a pulmonary embelism  My mom was 58 years old and was diagnosed only 3 weeks earlier.  My mom also only saw her newly born granddaughter for 2 and a half weeks (she was born on June 30, 2006).  I am so angry at this disease.  I am so angry that it is so mean and not easily detectable.  I am so angry that I'm 28 years old and my mom is dead, especially when I need her most.  I am so angry that this disease isn't being researched as much as it should be.  Is there a foundation or something where we can advocate and raise money for research???  This cancer MUST have research. It's mortality rate is very high.  I feel like I need to do something for my mom....for her memory and for the lives of others living with this awful mean disease!Thank you for listening,Kelly KellyI am sooo very sorry to hear about your mom.  I know how hard it all is to go through.  Reading your story was like reading my very own.  My mom died in Aug of 2005 from this disease.  She had a complete hysterectomy over 30 years ago.  The disease formed from the epithelial tissue in the lining of her pelvis.  She was diagnosed in July and died in Aug.  Died during her first chemo treatment from a pulmonary embellism.  This disease is horrifying to me.  Do you happen to know if this is a hereditary disease?  I have 2 girls and I am terrified myself and for them with this disease.  If I find other information about this disease i will email the link.  Please keep in touch Kelly.  Stac0313 Thu, 12 Apr 2007 00:00:00 GMT Holly says, "I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available." Dear Holly,I wanted to let you know how much I appreciate the message you posted about your mom's experience. I'm so happy to hear she has been in remission for over five years. My mother found out she has cancer two weeks ago. Her doctor performed surgery this past Monday to remove as much of the cancer as possible. Following the procedure, the doctor informed us of the diagnosis - Primary Peritoneal Carcinoma - and indicated that this cancer tends to respond well to chemotherapy. The doctor said she would not give us an expectation in terms of how much time might be ahead because chemotherapy is so much better than it was just a few years ago, with many drugs available, and so many patients have beaten the odds. None of us really know how long we will live and with something like this, attitude is everything! I've been trying to research this disease and am so glad to have found your message. I already shared your mom's experience with my mother, and it is strengthening our hope. She will fight this disease with her best effort. Thank you so much for this positive news. My thoughts are with all of you who are affected.Take great care,Kristi Idealscoach Thu, 12 Apr 2007 00:00:00 GMT  On 4/6/2007 Daughterofduree wrote:I have just found this site and want to share my story with everyone.  My mother was diagnosed with PPC in 2001 at the age of 70.  She went through a course of chemo and has been without symptoms since, although her CA 125 (as low as 25 when she completed chemo) has steadily climbed these past six years.  She has had regular blood tests and CT scans every 4 months.  Recently her CA 125 more than doubled from 800+ to 1700+ since her last test.  Today she had a CT/PET scan and we are awaiting the results.We know that she responded to chemo the first time and are optimistic that she will respond again.  The doctor says there are at least three new chemo therapies that have been developed since her last treatment.I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available.My thoughts are with all of you dealing with this dreadful disease and those who have lost loved ones to it.HollyHi HollyThankyou so much for your above message. I am a 30 year old sufferer of this terrible disease and I am appreciating any good feedback I can find, as any information at all is hard to come by.I was diagnosed in December 2005 and am about to have my 5th chemo. I started on paxlitaxol and carboplatin but had side effects and was changed to doclitaxol and carboplatin. You said above about other chemo treatments there were now and I was wondering if you have found out what they are. I am in Australia and am wondering if treatment is different any where else.I hope your mother has once again responded well to treatment and is back on the road to recovery !My thoughts and wishes are with you Kathy Too Young Sun, 22 Apr 2007 00:00:00 GMT  On 1/19/2007 Too Young wrote:Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  Hello. My name is Shannon..I am 31 years old and just recently I had an unusual Pap as well. Also was diagnosed with HPV..the strain that is known to cause cancer. I went in to my doctor initially because I had extreme bloating..lower back pain, frequent urination and heavy periods. I was DX with IBS some years back, but after the extreme bloating and heavy periods I decided to try to DX myself. I hit a survivor story message board for Ovarian cancer and read about their lives leading up to DX with OC. So I got scared and ran to the Docs. they did their ultra sounds and blood tests and called a week later and said nothing was wrong. But then 3 weeks later I get a call and they say I had an abnormal Pap and to follow up in 4-6 months. Well I asked what the exact test results said from the lab and they said CIN1. So I wasn't really worried. But then I did some more research and found that most people with CIN1 have HPV so I called my Doc back and had them run that test.  it was postive and the strain I have is the strain that causes Cancer.needless to say I go in for a Colposcopy this Friday, but I find myself not convinced that it is just CIN1 due to the symptoms that I have been having. Does this sound like what you went through. I have to prepar myself and so far I have been the one to push for tests to begin with. If I have no idea what I am getting into they will miss something. Looking back on my miserable feeling I have had for years...I know that This is something more. Please...if anyone has any info on what I need to do and ask my doc...let me know. Dragonfly2112 Tue, 29 May 2007 00:00:00 GMT  On 5/29/2007 Dragonfly2112 wrote: On 1/19/2007 Too Young wrote:Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  Hello. My name is Shannon..I am 31 years old and just recently I had an unusual Pap as well. Also was diagnosed with HPV..the strain that is known to cause cancer. I went in to my doctor initially because I had extreme bloating..lower back pain, frequent urination and heavy periods. I was DX with IBS some years back, but after the extreme bloating and heavy periods I decided to try to DX myself. I hit a survivor story message board for Ovarian cancer and read about their lives leading up to DX with OC. So I got scared and ran to the Docs. they did their ultra sounds and blood tests and called a week later and said nothing was wrong. But then 3 weeks later I get a call and they say I had an abnormal Pap and to follow up in 4-6 months. Well I asked what the exact test results said from the lab and they said CIN1. So I wasn't really worried. But then I did some more research and found that most people with CIN1 have HPV so I called my Doc back and had them run that test.  it was postive and the strain I have is the strain that causes Cancer.needless to say I go in for a Colposcopy this Friday, but I find myself not convinced that it is just CIN1 due to the symptoms that I have been having. Does this sound like what you went through. I have to prepar myself and so far I have been the one to push for tests to begin with. If I have no idea what I am getting into they will miss something. Looking back on my miserable feeling I have had for years...I know that This is something more. Please...if anyone has any info on what I need to do and ask my doc...let me know. Hi ShannonMy only advice to you is to trust your gut feeling and keep pushing doctors to do the tests. They found I had a large tumour in my stomach but then waited another three weeks to operate. After having 6 lots of chemo they have told me there is nothing else they can do for me .... dont you love doctors ! so now i am seeing every chinese herbalist and naturopath possible and hoping that one gives me a miracle. There is unfortunately not that much information on this horrible disease so do as I said I get back to the doctors and push for more tests. If they wont do it go see some one else. I wish I had been a bit more pushy and hadnt just sat back thinking the doctors knew best as I may not be in the situation I am in now. Thinking of you Shannon and wishing all the best. Please let me know how you get onKathy     Too Young Sat, 16 Jun 2007 00:00:00 GMT  On 6/16/2007 Too Young wrote: On 5/29/2007 Dragonfly2112 wrote: On 1/19/2007 Too Young wrote:Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  Hello. My name is Shannon..I am 31 years old and just recently I had an unusual Pap as well. Also was diagnosed with HPV..the strain that is known to cause cancer. I went in to my doctor initially because I had extreme bloating..lower back pain, frequent urination and heavy periods. I was DX with IBS some years back, but after the extreme bloating and heavy periods I decided to try to DX myself. I hit a survivor story message board for Ovarian cancer and read about their lives leading up to DX with OC. So I got scared and ran to the Docs. they did their ultra sounds and blood tests and called a week later and said nothing was wrong. But then 3 weeks later I get a call and they say I had an abnormal Pap and to follow up in 4-6 months. Well I asked what the exact test results said from the lab and they said CIN1. So I wasn't really worried. But then I did some more research and found that most people with CIN1 have HPV so I called my Doc back and had them run that test.  it was postive and the strain I have is the strain that causes Cancer.needless to say I go in for a Colposcopy this Friday, but I find myself not convinced that it is just CIN1 due to the symptoms that I have been having. Does this sound like what you went through. I have to prepar myself and so far I have been the one to push for tests to begin with. If I have no idea what I am getting into they will miss something. Looking back on my miserable feeling I have had for years...I know that This is something more. Please...if anyone has any info on what I need to do and ask my doc...let me know. Hi ShannonMy only advice to you is to trust your gut feeling and keep pushing doctors to do the tests. They found I had a large tumour in my stomach but then waited another three weeks to operate. After having 6 lots of chemo they have told me there is nothing else they can do for me .... dont you love doctors ! so now i am seeing every chinese herbalist and naturopath possible and hoping that one gives me a miracle. There is unfortunately not that much information on this horrible disease so do as I said I get back to the doctors and push for more tests. If they wont do it go see some one else. I wish I had been a bit more pushy and hadnt just sat back thinking the doctors knew best as I may not be in the situation I am in now. Thinking of you Shannon and wishing all the best. Please let me know how you get onKathy    Hi Kathy, Thanks for replying. I am doing my best to push doctors. At least this time I am dealing with my Doctor's PA instead of my actual doctor. He told me I has stress and to go to a spa or message therapist. Now at least I have a direction to follow and the PA is young and has more knowledge of the symptoms and takes people seriously. What caused you to go to the DR.s?. Did you have an abmormal pap as well? So far I am not finding anyone with symptoms that has HPV or Dysplasia. I do however suffer from alot of symptoms as I stated in my first message and I am very curious about all that. Why do I have symptoms at all. It is driving me crazy. If you have some time, please tell me your story.  I am very sorry to hear you are going through what you are going through. It is a hard thing to cope with. You are iim my prayers and if you need to chat I am here. Shannon  Dragonfly2112 Sun, 17 Jun 2007 00:00:00 GMT Hi all,  I am also new to this site and found some helpful info. My mom was diagnosed with PPC in June 05. She was having abdm pain and was brought to hospital to have a bowel obst removed. Her doc didn't remove the obstruction, just closed her up and told us she had PPC and had a week to live. Here we are two yrs later and she is still fighting. She had chemo and few months of remission but in Jan she was having pain again and CT showed fluid surrounding the liver, but not in it. She had it removed and is is cancer cells. She had to go back and have it drained again about six weeks later. They have increased her chemo drugs but some of fluid is still there. Here is the problem though, her CA125 has never been high. The highest it has been is 130, currently it is 18. Her doc is stumped and admits it. (we like her doc, he gave us lots of hope when we need it and he is the best in our area) he is bringing her case to the docs in his cancer clinic and has suggested she has surgery to remove part of the liver that he thinks could be producing the fluid. I am in the medical field and I am worried that once they open her up and expose the cancer to air it will accelerate it, like you hear so often. I hate this cancer! She was healthy and active before this. She is only 57, I am terrified of the thought of losing my mom. There is so little out there regarding this info, I feel so alone. Any insight to this would be great. Thanks!L isa LisaC Wed, 11 Jul 2007 00:00:00 GMT Dear Lisa,I am glad you found this list and shared your mom's history with PPC. My heart goes out to you and your mom. The posts here are such a gift, a wonderful source of support. I hope you will find some comfort as you continue to read the messages and share your journey with us. You mentioned that exposure to oxygen can make cancer cells spread. I'd never heard this before. Can you please explain? Just this morning, I was reading about some alternative cancer therapy that brings oxygen to the cells (I think). The website also warned that alternative and conventional therapy should not be mixed because they often contradict each other. One really needs to be careful when deciding what is best with so much conflicting information out there. It is nearly a full time job trying to find reliable information. Wow, Lisa, what an example your mom is of rising above the odds and surviving in spite of what others said. Yes, it is really challenging to know what steps are best and how to help your loved one maintain some quality of life with all the fighting this cancer entails. I know how difficult it is to find information, then determine what is trustworthy, balancing options of conventional and alternative therapy. All I can say is do your best and please remember to take great care of yourself while you are supporting your mom. I hope you find the answers you need to help your mom decide what route to take.My mother was diagnosed with PPC at the end of March 2007 after not feeling well (and many tests and doctor visits) since the previous fall. She had surgery ten days later, and completed chemo #5 yesterday. As you know, it's been quite a whirlwind for my family. The hardest part for my mother is that she is used to living a very busy, active life, with lots of travel, attending meetings all over the country. Right now, she must do whatever is necessary to fight this cancer. It's been hard for her not being able to "plan" for the future. We love her gynecologic oncologist and are so grateful for the care she is receiving. I know not everyone is so fortunate. However, my mother is  beginning to realize the chemo is hard on her body. This is making her somewhat depressed, worrying about what's ahead, as well as reminding me of the reality of this disease. I'm doing my best to eat healthy food and start to go on short walks with my mother because I believe lifestyle factors play a role in boosting the immune system and fighting the cancer, along with positive thinking, minimizing stress (easier said than done!), and releasing emotions. I recently started some therapy myself because of the role I'm playing as a caregiver trying to balance my own needs with those of my mother (and others). I'd love to hear advice from others in terms of lifestyle factors that seem to help during chemo as well as once a person goes into remission, which I hope my mother will enter soon. Hugs to all of you,Kristi Idealscoach Sat, 14 Jul 2007 00:00:00 GMT Hi!  Regarding the air causing cancer to spread, as I said in my message, you hear so often that once someone has surgery the cells seem to spread quickly. As far as I know there is no proven results about this. Lets keep in touch?!Take care,Lisa  LisaC Wed, 18 Jul 2007 00:00:00 GMT Hi Lisa, My sister was diagnosed at the age of 42 and she continues to fight today. All I can say is keep positive. There are so many times when test results may seem to not be going in the right direction but then, they change. My sister just completed her second round of chemo and her CA125 results never dropped until her second to last treatment. There are a couple of other websites that discuss these types of cancer as well as offer surgery. I think it's hard to know what to do but mostly continue to support our loved ones and remain positive. Also, I have met another women who has been battling this cancer for seven years and she continues to hang in there - I think that is very positive. Please feel free to email if you would like to keep in touch. Kelly --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Kelrunran Sat, 18 Aug 2007 00:00:00 GMT  On 8/21/2003 Deborah R. wrote:My mom was diagnosed with Primary Peritoneal Carcinoma last march. I am having a very difficult time finding information on this type of cancer. Her doctor tells us it behaves and is treated the same as ovarian cancer. She is getting ready to have her 6th chemotherapy treatment and I am worried because her ca-125 was originally 2938 and after she had surgery and 5 chemo treatments her ca-125 was down to 91 and all of a sudden it is now up to 111. Does anyone have any information on my mom’s cancer or what this ca-125 going up may mean? Deb H., MN  Bear man Tue, 21 Aug 2007 00:00:00 GMT  On 8/21/2003 Deborah R. wrote:My mom was diagnosed with Primary Peritoneal Carcinoma last march. I am having a very difficult time finding information on this type of cancer. Her doctor tells us it behaves and is treated the same as ovarian cancer. She is getting ready to have her 6th chemotherapy treatment and I am worried because her ca-125 was originally 2938 and after she had surgery and 5 chemo treatments her ca-125 was down to 91 and all of a sudden it is now up to 111. Does anyone have any information on my mom’s cancer or what this ca-125 going up may mean? Deb H., MN  Reply to Deb H.         I am interested in your situation because my wife has peritoneal Carcinoma and we are tracking her CA-125. My wife was diagnosed June 1 and had surgery June 12th. On her first chemo her ca 125 was 2600,came dowm to 1960 after her second and now she has done her third chemo and we have seen the biggest drop she is at 260. We are praying that her fourth chemo on the 28th of August will bring her rate down to double digits.        We will be praying for your mother and hope to see that her rate has turned back to a declining direction. Please keep us posted on her test results. Good Luck.                               Bearman   Bear man Tue, 21 Aug 2007 00:00:00 GMT  On 10/4/2006 Curlylocks wrote:Just read all of your messages and am so thankful to have found this board. Thanks for all of your posts. It really is hard to find much information on this cancer. My mom has PPC too... was diagnosed spring of 05. After surgery to remove her omentum she had an AWFUL few weeks in the hospital and then had to go back after she caught a bad infection following the first chemo treatment. Anyway, she made it through the six months of chemo and got back to a good standard of living... then I guess it was sometime this summer she started having trouble again... and has tried two different chemos this time... which don't seem to be helping... she keeps getting that fluid build up. About six weeks ago she had 4 litres drained... and then this week she had about the same drained. I guess one thing I'd like some more information on... or to hear your experiences... is once this fluid build up starts... can anything stop it? Will it just get more frequent? It seems so awful... what happens next??? This is a really mean cancer... and it has shown us how strong our mom is. She battled an unrelated breast cancer back in 04 only to have this pop up on 05. Its very strange to me that she got two cancers... and the drs say they are completely unrelated.... like getting hit with lightning twice. So anyway I just feel so bad for what she's having to go through and wish there was some better treatment for this one!!! I'm with whomever suggested we need to raise awareness of PPC. It is so closely related to one type of ovarian cancer... so maybe we could team up with them... I know your message was from last year, but your moms situation sounds so similar to my moms. She was diagnosed only one month ago with ppc. She had her omentum removed and now her pleural cavity keeps filling up with fluid. She had her first intraperitoneal chemo tx this week and is not tolerating it. How is your mom doing? Did you find any answers on why the fluid keeps coming back?  Frustrated with no answers, Kelly concerned2085 Fri, 31 Aug 2007 00:00:00 GMT  On 1/18/2007 Wendymoo wrote: On 7/20/2006 Annie2 wrote:My mother was diagnosed with primary peritoneal carcinoma back in 2000. She had surgery and chemotherapy in 2000 and was healthy for the last 6 years. Unfortunately, they just discovered a new tumor so we're going through this again. She really doesn't have any symptoms at this point, they seem to have caught it fairly early this time. We are optimistic. The only advice I have is to hang in there and be optimistic. My mother had a good five years and we're hoping after this next round of chemo she will have more good years. Best wishes.HI Annie2,Can  I ask you where the tumor was located and how they found it?  How is your mom now?  Are they giving her the same type of chemo again?I am a four year survivor of ppc but have been having some weird symptoms although all of my testing has been normal.  I am getting ready to have some ct scans done but I don't rely heavily on that test because it is very deceptive.  They were clear when I was diagnosed and thank god I had an aggressive oncologist who opened me up.....hence I am still here because of her.Thanks for any information you can give me about your mom,  You are in my thoughts and prayers.Wendy Hi Wendy,I haven't been on this site lately so I just saw your message.  My mom is doing pretty good.  She is still on chemo and is tired.  But to put that in perspective she played a round of golf today.   I believe that her tumor was between the liver and the pancreas in an area where they could not operate.  They discovered it by doing a scan after her CA125 test came back higher than usual.  Her CA125 level was at 900 which is elevated but much less than the 9000  level it was when she was first diagnosed with ppc in 2000.  I think that she was very lucky that they were able to see the tumor as that area is not always easy to see.  I referred to her tumor in the past tense because we are hopeful that it is gone.  She is meeting with her doctor tomorrow to go over the results of her latest scan.  Her scan three months ago showed that it was less than 2 cm, down from 6 cm when previously measured.  Her doctors seem optimistic that the chemo can wipe out what is left of the tumor.  I just thank God that the chemo seems so effective for her.I'm flying up to see my mom next week, she lives in another state and we are going to attend a seminar on genetic testing and ovarian and breast cancer prevention and early detection.  I hope you are doing well.  Best wishes. Annie2 Thu, 13 Sep 2007 00:00:00 GMT  On 4/6/2007 Daughterofduree wrote:I have just found this site and want to share my story with everyone.  My mother was diagnosed with PPC in 2001 at the age of 70.  She went through a course of chemo and has been without symptoms since, although her CA 125 (as low as 25 when she completed chemo) has steadily climbed these past six years.  She has had regular blood tests and CT scans every 4 months.  Recently her CA 125 more than doubled from 800+ to 1700+ since her last test.  Today she had a CT/PET scan and we are awaiting the results.We know that she responded to chemo the first time and are optimistic that she will respond again.  The doctor says there are at least three new chemo therapies that have been developed since her last treatment.I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available.My thoughts are with all of you dealing with this dreadful disease and those who have lost loved ones to it.HollyHi Holly, My mother was diagnosed 2 yrs ago with primary peritoneal cancer, she had been suffering for years with burning in the upper abdomen and esophagus, acidy stomach, just general gastric problems, doctors here locally removed her gallblader, put a stent in her liver with no relief, it was only when she began to get fluid on the stomach did they do a ct scan....it showed "thickening" of the peritineum, her general practitioner diagnosed ovarian cancer, but sent her to a specialist in Vancouver Wa. Thank goodness he did.. What a wonderful Doctor, he knew exactly what it was, (ppc) he did surgery the next morning and removed a tumor that had grown completely across her stomach (It had not penetrated the colon which was very good news).  Her chemo has been non stop up till current, she was going once a month since diagnosis, now that her ca-125 numbers are increasing she is going twice a month...the doctor has told her that she will always have to have some kind of chemo, so that the cancer can not run rampid, I am grateful for the 2 yrs since her diagnosis that she is still with us, your message gave me hope that she can hopefully continue more years.(although the latest ct scan showed lesions on the liver, one on a lung and now on the colon)  It is very hard to keep the optimistic feelings going, so many hills and valleys.  I am glad that your mother has responded well to chemo and that there was time between therapy...There are obviously many different chemo situations depending on the severity of the first diagnosis and many different outcomes that can't be predicted, reading your story today help me know that this terrible cancer can't keep everyone from living a longer , fulfilling life...my prayers for a positive out come are with you and your mom...just wanted to say thanks for posting and letting me tell my story. Victoria Victoria001 Mon, 24 Sep 2007 00:00:00 GMT My mom was diagnosed in August of 2005. There was no surgery to perform on her. She had felt awful for 8 months and was not diagnosed right away.  After her first 6 months of chemo her CA 125 was down and went without chemo for about 5 months. After that she had about 6 different types of chemo all together. None of the chemos seemed to help. She aways had fluid removed from the outside of her lungs…4-6 liters at a time. Seems like it was happening faster and faster. Then last Feb. she started to fill up in her abdomen area too. They had to rotate which spot they took the fluid from. Seems like the more often you drain the faster the faster it builds but they have to have it done… So to answer your question no it can’t be stopped and it will become more frequent. This cancer has no cure yet. It is a very mean cancer and it does show how strong mom is. It was a very hard way to watch mom pass away. My mom passed away Memorial weekend this year (2007). I'm with whomever suggested we need to raise awareness of PPC. It is so closely related to one type of ovarian cancer... so maybe we could team up with them... nfp1968 Tue, 25 Sep 2007 00:00:00 GMT I cannot believe I am writing on this message board but I now join you all as my beautiful mother has just been diagnosed with this cancer. The family are still in shock, not one family member has been directly connected with the big C before and we never thought anyone ever would. What wishful thinking. My mother is such an important part of our family I cannot comprehend how our family will be without her in it. But then I stop myself from thinking the worst and reading all the different stories and outcomes on this site is a blessing and a strength. I have lived far from my family for the past 20 yrs (they are all in Australia, I am in the US) but now is the time to make the transition, my kids are gaining their independence and I am planning on moving my life back to Australia, if this is not a good enough reason nothing would be. Mom starts chemo next Tues and we are all hoping and praying for some positive results. I have so much to learn about all the drugs and the numbers etc. I still cannot believe this is happening. Please pray for us. maggies daughter Wed, 31 Oct 2007 00:00:00 GMT hi Maggies Daughter I just read your message on the site. I am a 30 year old who was diagnosed with PPC in January of this year (07). I found out after giving birth to my one and only child, as ive now had a radical hysterectomy. I am in Australia myself and was wondering if there were any other people in the same situation as me living in my Australia. Please could you let me know where your mother is being treated and by who. I had my tumour removed in Jan 07 and then started chemo which I have now been on for the last 10 months. At one stage I was given 6 months to live but proved doctors wrong when the chemo I was on started to calcify the other tumours on my liver, bowel, bladder etcNow its just a waiting game to see what the next scan brings. Please let me know where you are in Australia because I would love to stay in contact as there is no one else here I have found to have this horrible cancer. Take care Too Young Mon, 12 Nov 2007 00:00:00 GMT Hi my mom was diagnosed with peritoneal carcinoma on Oct 16 2007I went home to be with her and just got back cuz I have my husband and kids here in Texas.She was given stage 4 her markers are at 3362.We are so scared for her.She has had a total of 3 drainings in a month with 4 liters out each time.She has been admitted 2 times already in the hospital.My sister is still with her and my dad.She has trouble with hemmoriods so bad she literly sceams using the bathroom.She has so much pain in her stomach that she cries all the time she already had the 1st round of chemo she did ok with it but she has her next 27 Nov.I guess thats when they will check her CA-125 again.She has to go through 2 more after that one with a total of 4 then they will do surgury.Her docs seem to keep painting a rosy picture but its hard seeing her go through this.Prayers are coming from everywhere.I just pray they work. My mom has diabetes high blood pressure and is 68 yrs old.Also her BP keeps dropping real low. but then if she stops the meds it goes up.No win thereHow common it it for her to get better with it being this bad.I want to go back and be with her.All anwers are appreciated Please do not hold back.Thank You  ktowngirl82 Sat, 17 Nov 2007 00:00:00 GMT I am sorry to hear your mother has this horrible disease.  My adoptive mother died October 30, 2006 of the same disease she fought long and hard but finally gave up.  My thoughts and prayers are with you and your family.Take care,Nancy nancysdaughter Sat, 24 Nov 2007 00:00:00 GMT  On 11/24/2007 nancysdaughter wrote:I am sorry to hear your mother has this horrible disease.  My adoptive mother died October 30, 2006 of the same disease she fought long and hard but finally gave up.  My thoughts and prayers are with you and your family.Take care,NancyHello I noticed your message my first time on this site.  My adotptive mother was diagnosed with PPCancer stage 3 in May 07.  She has undergone 7 cycles of chemotherapy after surgery to reduce the 4cm and 2cm tumour on her liver (unable to be removed).  The reason for my mail is that being adopted you have a unique relationship with your mum and one of the biggest fears of an adopted child is to lose a mother.  I hope I don't lose mine for sometime yet.  How did you cope with any adoptive issues.  Do you have birthparent contact.  I have very close birthparents that found me 5 years ago.  I am interested to hear about your feelings. Look forward to your response.   Joansdaughter Tue, 11 Dec 2007 00:00:00 GMT  On 10/31/2007 maggies daughter wrote:I cannot believe I am writing on this message board but I now join you all as my beautiful mother has just been diagnosed with this cancer. The family are still in shock, not one family member has been directly connected with the big C before and we never thought anyone ever would. What wishful thinking. My mother is such an important part of our family I cannot comprehend how our family will be without her in it. But then I stop myself from thinking the worst and reading all the different stories and outcomes on this site is a blessing and a strength. I have lived far from my family for the past 20 yrs (they are all in Australia, I am in the US) but now is the time to make the transition, my kids are gaining their independence and I am planning on moving my life back to Australia, if this is not a good enough reason nothing would be. Mom starts chemo next Tues and we are all hoping and praying for some positive results. I have so much to learn about all the drugs and the numbers etc. I still cannot believe this is happening. Please pray for us.Hello Maggies daughter,I wish your family well on your relocation.  I live in Australia and my mum was diagnosed May 07 with PPC.  I had relocated from the east back to the west and it was a blessing as I am now able to support my mum in her chemotherapy and recovery from this difficult treatment and disease. I hope your mums results are positive for you all and I have found it best to take one step at a time.  My mum had breast cancer 15 years ago (with 6mths of chemo) and now this PPC is unrelated. I am an only child and adopted at that so we have a very special and unique bond.  The only frustrating thing I have found is that different specialists all have different opinions and it is difficult to stay positive sometimes. There is always room for hope.    Joansdaughter Tue, 11 Dec 2007 00:00:00 GMT  hiya ... firstly im sorry to here your mum has this desease.. But i can give you information that just might give you the hope you are looking for.... In 2003 i was diagnosed with primary breast cancer... i had 6 mths chemotherapy and 5 wks radiotherapy... i was lucky so i was told as it had not gone into my lymph node but they removed it anyways.... (i lost both my grandmother and my aunty with breast cancer that had spread from the breast to the ovaries and beyond.... my aunty passed down some vital information before she died....(she was a nurse) anyone in the family who was unfortunate to get breast cancer to have their ovaries removed straight away... well for near on 2 years i requested that my ovaries be removed... but only got the answer that because my breast cancer wasnt hormone reflective i didnt need to have them removed....well basically in march 2005 iwasnt feeling too good i was bleeding irratically and having pinky blood in between periods... and i felt totally drained... i had a routine cervical smear test which showed abnormal cells... i decided to ask for an hysterectomy and to have my ovaries removed... the doctor still thought i was too young but decided to ask the geneology department given my past history of breast cancer and having a family history of the desease what my chances were of getting ovarian cancer.... the result was 1 in 4 so as you can imagine both my doctor and myself agreed to go ahead......i had the operation and found that i had cancer on both ovaries...but the cancer at that point hadnt gone anywhere else... i was given chemotherapy again but after 4 treatments i was experiencing tiredness in my limbs and was told it was nerve damage due to taxatere....(sorry this is long windered but i hope to give insight to many people) after my treatment stopped i felt great... i got my self a job and things were looking up.... i was scheduled to have breast realignment....but that was put on hold... at the beginning of the year (2007) i saw my oncologist who told me if the cancer was to come back i would probably see something in the coming year... at the time i was aware of a lower abdominal pain when i was finisheing urinating...i was treated for a urine infection... this aching continued and i was treated again... the aching still did not go away...i started to gain weight quite quickly and my tummy started to bloat.... i visited my gp who diagnosed ibs (irritable bowel syndrome) i was given medication for it but the symptoms increased and so did my tummy size ...i saw a 2nd doctor who diagnosed the same but made an appointment to have a ultrsound scan on the 12th september.... in the mean time i went to A and E and a x ray was took of my abdomen... the doctor diagnosed gas ! i went for the ultrasound and was told i had fluid around my liver and that it most certainly wasnt ibs ! i returned the same day for an MRI scan which showed i have carcinoma nodules on my peritoneam, liver, and spleen... and the swollen tummy was malignant acites.... i was taken into hospital and had 5.7 litres of fluid drained... i was told that i may well fill back up... i was given capecitabine(chemotherapy) orally. I have to take it for 2 weeks and then 1 weeks rest... continuing... after just four treatments i am in complete remission !the carcinomas have completely disappeared and the fluid never returned... i am still continuing to work and feel absolutely great....I know everyone is different and respond to drugs differently... but im living proof it works... and i can stay on the drug indefinately....i hope this gives you hope and to anyone else reading this... if youre concerned and have unexplained symptoms dont leave it to chance...it may not be anything serious... but it also could be ....early diagnosis is paramount with Cancer....good luck and health to all ....regardsMandy Angel Mandy1966 Sat, 22 Dec 2007 00:00:00 GMT I am not a doctor but i am a survivor of this dreadful desease.....if your at all concerned about your symtoms then please dont delay in going to see your doctor....sudden weight gain can be a symptom (over a month or two) as can weight loss... abdominal swelling (tightness) as in pregnancy.....abdominal pain and if the liver is affected pain in the right shoulder.... gas can also be a symptom.... and upset in bowel movements... you know when something just doesnt feel right... you know your own body.... best to have your symptoms thoroughly investigated... good luck Mandy1966 Sat, 22 Dec 2007 00:00:00 GMT I feel for everyone on this discussion board and my thoughts and prayers go out to all of you!  My mom pased away Oct 21 2007 from PPC.  She fought a long hard 21 month battle with this horrible cancer.  Stay positive and spend as much time as you can with your mom.  I am so glad I did.  Best wishes,Lyn Perri Lyn Sun, 13 Jan 2008 00:00:00 GMT  On 1/13/2008 Perri Lyn wrote:I feel for everyone on this discussion board and my thoughts and prayers go out to all of you!  My mom pased away Oct 21 2007 from PPC.  She fought a long hard 21 month battle with this horrible cancer.  Stay positive and spend as much time as you can with your mom.  I am so glad I did.  Best wishes,LynDear Lyn,I am a 31 year old women with a 18 month old little boy. I was diagnosed with this horrible cancer a few months after my son was born. The doctors have tried all treatments with me and nothing has been able to cure this cancer. I am now on a chemo that will only delay the envitable. I know this is a horrible thing to ask but please understand I need some answers. What were the signs of your mum going downhill ? I am still feeling ok apart from the horrid side effects of chemo but I need to know the signs for when things start to deteriorate. Unfortunately all the doctors will give me is text book answers and just keep saying I will die from this. I am making every day count and am trying to leave behind as many memories as possible for my son so he may have an idea of who his mum was. Sorry to ask such a sad question and I totally understand if you don't answer.Kathy Seiffert Too Young Wed, 12 Mar 2008 00:00:00 GMT  On 3/12/2008 Too Young wrote: On 1/13/2008 Perri Lyn wrote:I feel for everyone on this discussion board and my thoughts and prayers go out to all of you!  My mom pased away Oct 21 2007 from PPC.  She fought a long hard 21 month battle with this horrible cancer.  Stay positive and spend as much time as you can with your mom.  I am so glad I did.  Best wishes,LynDear Lyn,I am a 31 year old women with a 18 month old little boy. I was diagnosed with this horrible cancer a few months after my son was born. The doctors have tried all treatments with me and nothing has been able to cure this cancer. I am now on a chemo that will only delay the envitable. I know this is a horrible thing to ask but please understand I need some answers. What were the signs of your mum going downhill ? I am still feeling ok apart from the horrid side effects of chemo but I need to know the signs for when things start to deteriorate. Unfortunately all the doctors will give me is text book answers and just keep saying I will die from this. I am making every day count and am trying to leave behind as many memories as possible for my son so he may have an idea of who his mum was. Sorry to ask such a sad question and I totally understand if you don't answer.Kathy Seiffert Dear Kathy My Mom passed away October 11,2006 with PPC - she went into the hospital on 9/11 and 30 days later she was gone. Her diagnosis came 10 days after she went into the hospital - and before she could have her 2nd treatment of chemo she slipped into a coma and passed away 11 days later. She was in End Stage 4 of the disease. The problem is there is so little information on the disease - her symptoms included a large bump in her stomach, a total loss of appetite and fatigue. She could barely walk, or even lift her head from the bed - and all came out of nowhere. She had no known symptoms prior to entering the hospital. The bigger issue was she saw her doctor almost weekly due to her thyroid removal some 20 years before and her diabetes. None of the doctors took a CA125 test ever!For your own sake - keep checking your CA125 and also get SEVERAL opinions! I am so sorry to hear of your diagnosis - but if I can help someone else fight through this horrible disease then I know my Mom is smiling! The hardest part is knowing you have a little one who needs you - my daughter is now 10 and cries almost everyday about her "Bubbie" - she misses her so very much and wants another hug from her... keep fighting and reaching for the cure! Elissa  bobbiesbabygirl Wed, 02 Apr 2008 00:00:00 GMT  On 1/29/2007 Kellbell529 wrote:My mom was diagnosed with Primary Peritoneal Carcinoma (stage 4) on June 28, 2006. For a year prior, my mom had symptoms similar to someone with irritable bowel syndrome or an ulcer.  She had stomach pains, constipation, and towards the end of May 2006 and until her diagnosis, started to have rapid weight loss, fluid build up in her abdomen and fatigue.  For the year prior to her diagnosis, she had CT scans, ultrasounds, endoscopy's, pap smears, you name it.  All of those tests came back clear until June 28th.  They decided her course of treatment would be chemotherapy.  She was so weak and frail.  They put in a mediport on Friday, July 14th, and that Sunday on July 16th she was put in the hospital, because she got a blood clot in her arm from the mediport.  She was in the hospital and while in there was in excruciating pain.  She was vomiting what looked like coffee grinds and couldn't really eat.  On Wednesday, July 19th, I spent the day with my mom in the hospital and she was vomiting, in pain, lethargic, you name it. They took her for an x-ray to make sure her bowels weren't twisted..they weren't.  That evening we got a phone call saying she was having trouble breathing and she was being taken to the ICU, my mom died at 2:25 a.m. on July 20th., because of a pulmonary embelism  My mom was 58 years old and was diagnosed only 3 weeks earlier.  My mom also only saw her newly born granddaughter for 2 and a half weeks (she was born on June 30, 2006).  I am so angry at this disease.  I am so angry that it is so mean and not easily detectable.  I am so angry that I'm 28 years old and my mom is dead, especially when I need her most.  I am so angry that this disease isn't being researched as much as it should be.  Is there a foundation or something where we can advocate and raise money for research???  This cancer MUST have research. It's mortality rate is very high.  I feel like I need to do something for my mom....for her memory and for the lives of others living with this awful mean disease!Thank you for listening,KellyKelly,I am 27 and we just discovered my mom has PPC. I'm very frieghtened. I am so so sorry to hear about your mother. I can't imagine her dying. I need her. I'm not married, she has no grandkids. We need her here for all these things. I teared up when I read your messages. I just found this site today. My mom is only 49. she is 90 lbs and dropping. I'm so scared. How are you? As soon as we found out, I refilled my Prozac rx. I hope you have found a way to cope with all of this.I was amazed to see how many woman have this and the stories are sooo much alike. Thanks,Ann  ANNIEBB Wed, 02 Apr 2008 00:00:00 GMT  On 4/2/2008 bobbiesbabygirl wrote: On 3/12/2008 Too Young wrote: On 1/13/2008 Perri Lyn wrote:I feel for everyone on this discussion board and my thoughts and prayers go out to all of you!  My mom pased away Oct 21 2007 from PPC.  She fought a long hard 21 month battle with this horrible cancer.  Stay positive and spend as much time as you can with your mom.  I am so glad I did.  Best wishes,LynDear Lyn,I am a 31 year old women with a 18 month old little boy. I was diagnosed with this horrible cancer a few months after my son was born. The doctors have tried all treatments with me and nothing has been able to cure this cancer. I am now on a chemo that will only delay the envitable. I know this is a horrible thing to ask but please understand I need some answers. What were the signs of your mum going downhill ? I am still feeling ok apart from the horrid side effects of chemo but I need to know the signs for when things start to deteriorate. Unfortunately all the doctors will give me is text book answers and just keep saying I will die from this. I am making every day count and am trying to leave behind as many memories as possible for my son so he may have an idea of who his mum was. Sorry to ask such a sad question and I totally understand if you don't answer.Kathy Seiffert Dear Kathy My Mom passed away October 11,2006 with PPC - she went into the hospital on 9/11 and 30 days later she was gone. Her diagnosis came 10 days after she went into the hospital - and before she could have her 2nd treatment of chemo she slipped into a coma and passed away 11 days later. She was in End Stage 4 of the disease. The problem is there is so little information on the disease - her symptoms included a large bump in her stomach, a total loss of appetite and fatigue. She could barely walk, or even lift her head from the bed - and all came out of nowhere. She had no known symptoms prior to entering the hospital. The bigger issue was she saw her doctor almost weekly due to her thyroid removal some 20 years before and her diabetes. None of the doctors took a CA125 test ever!For your own sake - keep checking your CA125 and also get SEVERAL opinions! I am so sorry to hear of your diagnosis - but if I can help someone else fight through this horrible disease then I know my Mom is smiling! The hardest part is knowing you have a little one who needs you - my daughter is now 10 and cries almost everyday about her "Bubbie" - she misses her so very much and wants another hug from her... keep fighting and reaching for the cure! Elissa Dear Kathy,My heart went out to you when I read of the difficulties you are having.  I hope this e-mail will be one to bring you hope and maybe some ideas.  I am a 78 years old great-grandmother.  My mother had both ovarian cancer and breast cancer.  She died 30 years at age 75 after a five year battle with cancer.  In spite of three surgeries (one time was both abdominal and breast surgery) chemotherapy and radiation, she managed to live five years.  More of that time was "good" time than bad and Mother got a lot of joy out of those years.  My own story is even better.  I had been having a CA125 once a year and a pelvic ultrasound once a year for about 15 years as a sceening tools. I alternated them every six months.  I had a normal untrasound in July of 2002.  I would have had the next CA125 in January of 2003, but in December 2002 with no other symptoms, I noticed that when going up and down  stairs I was getting unusually short of breath.  X-rays showed that I had a pleural effusion.  After 9 days in the hospital during when I had a thoracentesis twice to drain fluid from my chest, numerous CT scans and many blood tests, analysis of the fluid showed that I had adenocarcioma with an unknown primary site.  They knew it hadn't started in my chest, although there were cancer cells in the fluid showing it had spread to the pleural cavity. I had blood drawn for a CA125 once they knew it could be ovarian cancer or PPC because those cancers are forms of adenocarcinoma.  That blood was drawn just before I left the hospital, and the results were to be given to me by an oncologist whom I would see in his office in a few days.  When I saw him and his associate, they told me my CA125 was normal.  Both had looked at the date wrong!   My last routine CA125 had been done January 3, 2002; the blood in the hospital was drawn January 3, 2003 before I went home.  THEY WERE LOOKING AT THE TEST THAT HAD BEEN DONE THE YEAR BEFORE AND WAS NORMAL AT 12!  It was three more months before I knew that though.  Never since have I ever accepted anyone's word for anything.  I always get a copy of all lab reports and scans and read them myself. Although there would be nothing curative about it, I was readmitted to the hospital a week later to have a pleuradesis to help my breathing.  This was done by thoracic surgeon who went into the pleural cavity and sealed the walls of the pleural cavity so that fluid could not collect there.  It restored me almost to normal breathing.In March I was still seeing the same two oncologists.  They thought it might be breast cancer, but didn't understand why they couldn't find it.  I did test positive for breast cancer blood markers, so back in January they had me on Armidex which inhibits the production of estrogen that can fuel breast cancer.  When some blood tests were being done again in March, I asked that they do a CA125 again.  The main oncologist called and told me that there was a surprise in my CA125, it was 1740.He did do one thing that was very right, I'll give him credit for that.  He referred me to the gynecologic oncologist/surgeon who saved my life.  Spots of cancer in my abdomen showed up now on a CT scan.  She operated and there were at least a dozen tumors scattered around on the peritoneum and on the surface of organs.  My ovaries were normal.  I had a total hysterectomy and abdominal debulking to remove just about anything one can live without and on which the cancer would like to grow. I insisted that that tissue removed be examined by pathologists at two major medical centers.  The pathology reports were in agreement with each other.  I had primary peritoneal carcinoma stage 4, grade 3.  Everyone know what stage 4 is, grade 3 meant it was the fastest growing of three possible grades.Eight days later I embarked upon the rest of the fight for my life.  It consisted of 53 weeks of chemotherapy-- a week more than a year.  First I had 8 treatments of Paclitaxel and Carboplatin, these were given every three weeks.  Next I had seven months of  a lower dose of Paclitaxel alone.  These treatments were given every week for three weeks in a row, and then I'd have one week to rest before starting the next three weeks of treatment.Along the way it was suggested that "I could stop if I wanted to and see what would happen", "I could stop to have as much good time as possible", etc.  I guess I inherited Mom's strong will to live, and surgery and treatment were better than when she was diagnosed.  No way was I going to stop.This January 2008 I had chest, abdomen and pelvic untrasounds.  Everything is stable.  My CA125 was 9.  Next week I'll have another CA125 done.  I get it done every three months and will for the rest of my life.  If the cancer comes back, back for surgery and treatment I'll go.Kathy, did you have a good gynecologic oncologist/surgeon?  She both did my surgery and ordered my chemotherapy (Although it was her male associates who seemed to wonder if I'd want to quit treatment from time to time.)  She still sees me twice a year now and orders the every three month CA125 tests.  Have they ever said anything more could be done for you surgically?  I think they don't do the three week on and one week off treatments of paclitaxel everywere, but it certainly worked for me.Don't let anyone tell you death from this is inevitable.  My specialist was quite annoyed when she heard that other doctors had told me that and even given me an estimate about how long I might live.I hope you are feeling well enough to let those of us at this site know how you are now.  If you have any questions that I might be able to answer, please don't hesitate to ask.With empathy,Marge   wishawkstwo Sat, 05 Apr 2008 00:00:00 GMT Dear MargeThank you for answering me ..... you give me hope ! I have unfortunately had a bad run of luck with doctors and treatment. Through my whole pregancy with my