PRIMARY PERITONEAL CANCER

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Comments

  • Michelle E
    Michelle E Member Posts: 1

    Hello all
    Dear All

    My mum is 71 and has just been diagnosed with PPC. Two of her sisters have died from breast cancer a few years back. My mum kept doing mammograms to ensure that she also didn't suffer from breast cancer and it was always clear. Until last week when she felt pain in her stomach and was bloated. She was taken to hospital and a CT scan showed that she had a moderate to intermediate PPC with a couple of cancer cells on her liver. She has been drained from the fluids 3 times in the last week. 5 litres altogether now. Her CA125 was 178.

    She started chemo treatment (not sure what the exact medicine is called, I shall find out) on Tuesday. She was ok during treatment, but when she went home, she experienced high temperature and infection in her urine. She has been also going to the toilet frequently and has pain whilst passing her stools. The doctors subscribed her antibiotics for her urine infection and cream and pain killers for her behind. She's also having pain in her knees.

    Are these side-affects normal? Will she get better? Her next chemo is in 3 weeks' time. Is that typical? What other side-affects will she experience? hairloss? I am very worried about her and finding difficult to cope, any advise is much appreciated. People are saying different things about life expectancy with this illness. Is there a typical median for this? Also, will chemo improve her life, or is it less painful to carry on living without treatment?

    Many thanks to you all. All the best.
    Hannah

    Chemo side effects
    Hi Hannah and to everyone else on line,

    My mum is 66 and was diagnosed withh PPC about 8 weeks ago. She had a hysterectomy last year however ovaries were left in. Mum had her surgery aroung 5 weeks ago where they removed her ovaries and her omentum. Pre the surgery we new that there was cancer in the omentum also and that it would be removed. The surgery also revealed that it had started to grow where the womb used to be and had started to go to the ovaries however did not start there, more than likely started in her tubes as it was there also. So overall very scary as now confirmed in 5 different places.

    Her oncologist explained that the surgery is really about exploring futher and removing what they can to better assist the chemo as the chemo is the only real cure for this. Mum's chemo was last thursday (6 days ago). She was told the first 3 days are the worst however it has just gotten worse every day. Her symtoms started on day 2 with severe stomach pain, leading on to nausea, constpation which has then lead onto severe dehydration from vomiting, back in hospital yesterday on a drip, given enima which has brought on sever diarrhea. Overall she is in excrutiating pain and cannot keep any food down and does not want to even continue with the chemo if it continues like this. She called the cancer help line and they put her in contact with a breast cancer survivor who couldn't relate to her chemo reaction as she didn't have any. So mum is feeling quite hopeless about the whole thing and really wants to know from otheres if this gets better as we are now at the end of day 6 with no light in sight. Her other concern is that if she reacts so severely that they may not be able continue the treatent anyway (she ended up back in on a drip 9 days after the surgery also dehydrated ect).

    So overall like you I am looking for some responses on the chemo side of it all as I have read all of the postings and most people don't refer to their chemo experiences as being horrific, or maybe they were and the memory has just faded. Hannah in answer to some of your specific questions in your last paragraph,my mum's cycle is to have 6 treatments overall every third thursday. Her oncologist told her she will lose her hair. Side effects are aches in knees and joints and if the feet and hands experience too much numbness and tingling it may mean slowing down treatments as this can result in not being able to walk.

    Many thanks to all of you brave ladies for sharing your stories and helping those of us that are trying to help our mums through this.

    Michelle
  • rhondanna
    rhondanna Member Posts: 8

    Primary Peritoneal Carcinoma
    Hi Chicagocx, I can identify with you. I was diagnosed this past April with Serous Papillary Primary Peritoneal Carcinoma, Stage 3C @ age 31. It find it extremely fusterating when trying to information about this diease. As you said and many of us with ppc find out, yes it behaves as ovarian ca, but it is different. Currently I am on the GOG-0218 phase III trial with Carboplatin & Taxol -/+ bevacizimab (avastin). It is a blind study.

    After my third treatment, my CT scan of the abdomen and pelvis did show some improvement. I would also like to mention that I was only have to have one fallopian tube and ovary removed during my surgery, not that total abdominal hysterectomy and omentectomy that was planned.

    I have just completed cycle #6 and my CA-125 is going up. It is the scariest thing in the world. I feel that I am at a cross roads....and considering a second opinion. Currently I am being treated in the Chicago. So I guess my question would be to anyone reading this. Does anyone have any recommendations, as to who to seek out for a second opinion on this type of cancer? I did see that someone mentioned Mayo Clinic, Rochester, MN....and that is definately a medical center that I am considering.

    Take Care,

    Christina

    primary peritoneal cancer
    I had a good experience getting a second opinion at Mayo Clinic a few years ago, but recommend M.D. Anderson in Houston - they confirmed my doctor's treatment of me with Tamoxifen and said that 10% of women are "low-grade" meaning the tumors are slower growing, that traditional chemo does not work, that if you have estrogen receptors in your tissues hormonal agents seem to be working. I have been stable on Tamoxifen for a year. If that stops working there are other hormonal agents. I was diagnosed Stage 4 in January 2006.
  • ginacook
    ginacook Member Posts: 6
    saundra said:

    New Topic
    At the top left hand corner of the Ovarian Cancer Discussion page there is a link to click that says "Post a new topic. Clic on that and enter subject and have a go. That will put you at the top of the list.

    I have had two debulking surgeries... one in July, 2007 at age 68 and this year (obsructed bowel plus debulking) at age 71. The second one was much harder on me than the first. So, I think age has a part. It is a difficult surgery and requires getting up and moving. It would depend on your mother's physical condition, I would think. I did take 4 doses of carbo/taxol prior to surgery that shrunk the many tumors by half and was not too hard on the body. I would try that before the surgery.
    Saundra

    an update
    Hi Saundra and thanks so much for responding. The caregiver role has overwhelmed me this week, so sorry for the delay in getting back to you. I have never posted on any site except maybe 4 times a year on Facebook. I was really unsure as to how this all works, but I imagine I will get the hang of it. My Mom went today for a Neulasta injection and I was really worried all night about side affects. It is hard to look up information sometimes since many people tend to post negative comments. After much thought and talking to friends and relatives, we went to get the injection, and so far so good. While we were there, I got her CA 125 results and it had dropped 900 since her first treatment. Is that normal? Her Dr. has not given her the taxol because her WBC counts were down with the carbo alone. I am not sure about the debulking surgery. She is healthy for an 86 yr. old, but she is still 86. We will see
    I hope you are feeling better since your surgery. It is always rough when you are in the recovery phase. I am sending healthy hugs your way.
    Thanks again and stay strong
    Gina
  • ginacook
    ginacook Member Posts: 6

    Hi Gina
    Your mum sounds like she is in good hands. Yes she can just have treatments. I never had surgery because my cells were spread too wide and it would've been a very invasive procedure. So I had 6 rounds of carboplatin and Taxol every 3 weeks. My CA 125 was similar to your mums at 1119 and by the end of my treatment is was 34. So chemo alone can work. It is just over 6 months since my chemo stopped and I am feeling really well. However I am a little younger than your mum - I am 50 and was very fit and active that was why they gave me taxol as well (taxol is the one that caused your hair to fall out)

    My CA125 went up to 71 last visit so I am waiting for the next one to see what the doctors wan to do with me.

    Hope your mum does ok, Tina xx

    Update and reply
    Hi Tina and thanks for getting back to me. I am relieved to hear that you had treatment only since it was the "very invasive " part that scared me. As it was described, and from what I read, it would not be an easy surgery on an 86 yr. old, and it cannot be performed laproscopically or robotically. My Mom has had two treatments so far. After the first her Ca-125 dropped from 1100 to 200. Is that a normal response? I imagine the normal value (less than 35)is harder to achieve and to keep with such a difficult cancer to treat. Her WBC count was low so she had a Neulasta injection today. Her CA 15-3 is elevated as well. It is a strange marker that can mean a number of things. Her Dr. is only giving her the carbo alone without taxol since she is older and since her WBC's were decreased. He told me that she got a 6 tier dose the first time, but reduced it last Friday to a 5 Tier dose. I hope the carbo alone will work for her. She felt miserable for several days after treatment, but is on the mend now...she will feel better just in time (I am sure) for the next treatment.
    When do you have your next visit? I understand how anxious you must feel. I had NHLymphoma, and every visit I was afraid of what might turn up next. Thankfully, I have been in remission for over 10 years now. It is a fight every day. Stay healthy and strong, and be well. I'll check back with you soon. Thanks again for responding. It is nice just to talk to someone who understands. Not much info on PPC around. Gina
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    ginacook said:

    Update and reply
    Hi Tina and thanks for getting back to me. I am relieved to hear that you had treatment only since it was the "very invasive " part that scared me. As it was described, and from what I read, it would not be an easy surgery on an 86 yr. old, and it cannot be performed laproscopically or robotically. My Mom has had two treatments so far. After the first her Ca-125 dropped from 1100 to 200. Is that a normal response? I imagine the normal value (less than 35)is harder to achieve and to keep with such a difficult cancer to treat. Her WBC count was low so she had a Neulasta injection today. Her CA 15-3 is elevated as well. It is a strange marker that can mean a number of things. Her Dr. is only giving her the carbo alone without taxol since she is older and since her WBC's were decreased. He told me that she got a 6 tier dose the first time, but reduced it last Friday to a 5 Tier dose. I hope the carbo alone will work for her. She felt miserable for several days after treatment, but is on the mend now...she will feel better just in time (I am sure) for the next treatment.
    When do you have your next visit? I understand how anxious you must feel. I had NHLymphoma, and every visit I was afraid of what might turn up next. Thankfully, I have been in remission for over 10 years now. It is a fight every day. Stay healthy and strong, and be well. I'll check back with you soon. Thanks again for responding. It is nice just to talk to someone who understands. Not much info on PPC around. Gina

    Hello Gina
    Firstly a drop in the the CA125 from 1100 to 200 is fantastic and a really good sign that the treatment is working. You are right in saying that (in the UK) the normal range is 0 - 35 and I was lucky enough to reach 34 2 check ups after my treatment fininshed.

    My next visit is next week 18th October. It was 25th but I have been so anxious that they have moved it forward. I think I'll be able to cope with whatever thr outcome - it is the waiting and thinking that is so hard.

    I am so pleased to see you are a 10 year survivor from NHLymphoma. Please ask me anything and because this is such a massive thread of 84 messages why not start a new one and it will be easier for people to find the messages.

    Take care to you and your mum

    Tina xx
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member

    Chemo side effects
    Hi Hannah and to everyone else on line,

    My mum is 66 and was diagnosed withh PPC about 8 weeks ago. She had a hysterectomy last year however ovaries were left in. Mum had her surgery aroung 5 weeks ago where they removed her ovaries and her omentum. Pre the surgery we new that there was cancer in the omentum also and that it would be removed. The surgery also revealed that it had started to grow where the womb used to be and had started to go to the ovaries however did not start there, more than likely started in her tubes as it was there also. So overall very scary as now confirmed in 5 different places.

    Her oncologist explained that the surgery is really about exploring futher and removing what they can to better assist the chemo as the chemo is the only real cure for this. Mum's chemo was last thursday (6 days ago). She was told the first 3 days are the worst however it has just gotten worse every day. Her symtoms started on day 2 with severe stomach pain, leading on to nausea, constpation which has then lead onto severe dehydration from vomiting, back in hospital yesterday on a drip, given enima which has brought on sever diarrhea. Overall she is in excrutiating pain and cannot keep any food down and does not want to even continue with the chemo if it continues like this. She called the cancer help line and they put her in contact with a breast cancer survivor who couldn't relate to her chemo reaction as she didn't have any. So mum is feeling quite hopeless about the whole thing and really wants to know from otheres if this gets better as we are now at the end of day 6 with no light in sight. Her other concern is that if she reacts so severely that they may not be able continue the treatent anyway (she ended up back in on a drip 9 days after the surgery also dehydrated ect).

    So overall like you I am looking for some responses on the chemo side of it all as I have read all of the postings and most people don't refer to their chemo experiences as being horrific, or maybe they were and the memory has just faded. Hannah in answer to some of your specific questions in your last paragraph,my mum's cycle is to have 6 treatments overall every third thursday. Her oncologist told her she will lose her hair. Side effects are aches in knees and joints and if the feet and hands experience too much numbness and tingling it may mean slowing down treatments as this can result in not being able to walk.

    Many thanks to all of you brave ladies for sharing your stories and helping those of us that are trying to help our mums through this.

    Michelle

    Chemo
    I'm sure you will get more responces to your questions but you should start a new topic to make sure people read your posts.
    Chemo is different for everyone mine was not bad til the third treatment then it was awful but not as bad as your Moms then my forth has not been too bad so far. I have read of some people having a horrible first treatment then getting progressively better or some
    staying the same.
    Do call your chemo nurse as they want to know what is happening and can help with medication for everything.Usually a week after the chemo you start to feel better, I hope your Mom is starting to get stronger and I hope her next treatment goes easier for her.
    Good Luck
    Colleen
  • starbaby62
    starbaby62 Member Posts: 5
    PPC
    I also was just diagnosed with peritoneal cancer. Told it is stage 3 today. They said nothing about ovarian cancer to me. I will ask tomorrow.
  • starbaby62
    starbaby62 Member Posts: 5
    PPC
    I also was just diagnosed with peritoneal cancer. Told it is stage 3 today. They said nothing about ovarian cancer to me. I will ask tomorrow.
  • lillin20
    lillin20 Member Posts: 8
    lillin20 said:

    how they know
    many times PPC is diagnosed in women who do not even have ovaries anymore (from ovary removal). From what I understand PPC IS ovarian cancer...the only difference is- it is found elsewhere (Mainly and most often- the omentum and colon)
    The bummer thing is that the Omentum is an "organ" that regrows...so simply removing it doesn't mean the omentum is gone...it will re-grow and thus PPC has the opportunity to come back...it stinks!

    My grandma was diagnosed the SAME way as your mom...she went into the hospital w/ pain in her side and they did an ultrasound and decided she needed to have her gall bladder removed- after the gall bladder was examined in pathology they noted PPC on it...then our journey began.

    My grandmother never had any other cancers in her life- and neither did my great grandma...just this one.

    update on my grandma
    Hi everyone. I dont know where else to post this....but I wanted to update. My grandma has chosen to not continue with any further treatment. This is her 3rd relapse and the chemo the second time around was terrible for her. She is expected to pass before Thanksgiving. Please keep our family in your thoughts and prayers.
  • jinni28
    jinni28 Member Posts: 3
    peritoneal cancer
    Hi,
    My name is Jinni, I was diagnosed in July 2010 with stage 3c. I did everything right too. So scary. I'm on cisplatin and taxol also. Do you have the port? How often do you get chemo? I was 120 pounds when this started, and now I'm down to 101.... trying to gain weight, but the stomach pains, gas, bloating make it hard to eat. Can't eat dairy, and my anxiety level is off the charts. They gave me ativan, seems to help, but I'm up to over 2 mg throughout the day.... are you in any kind of pain? Not too many people to talk to about this.
    Take care,
    jinni
  • amco35
    amco35 Member Posts: 1
    rhondanna said:

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

    primary peritoneal cancer
    rhondanna - I'm a little confused that you said you've been on Tamoxifen for a year. I understand this drug (if it's the same one) is dangerous and can actually cause some cancers! http://www.all-natural.com/tamox.html Plus it was mainly used to treat breast cancer! My aunt has stage 3 primary peritoneal cancer and has had chemo and was in remission for about 6 months. She's recently been told that it's back and she has low level disease. She was intitially treated with Carboplatin and Taxol. I don't know what they'll be treating her with next. She's very depressed as she was told she the survival rates are about two years as this cancer will probably just keep coming back. She is 61 years old and lives in Wales, UK. Does anyone think she should travel to the Mayo Clinic?

    Amco35
  • DGreer
    DGreer Member Posts: 1
    Hello everyone,
    I am new to

    Hello everyone,

    I am new to this site and I have stage 3 Paratinel Cancer. I am so scared and is everyone els. I have doing Chemo for 8 months and my CA-125 is at 49. I started out at 3113. I was suppose to go to a maintance program but I am still to high. The doctor is saying I have 2 to 3 years. I am a Mother of two boys and Five Grandchildren.
  • blondecat
    blondecat Member Posts: 13
    DGreer said:

    Hello everyone,
    I am new to

    Hello everyone,

    I am new to this site and I have stage 3 Paratinel Cancer. I am so scared and is everyone els. I have doing Chemo for 8 months and my CA-125 is at 49. I started out at 3113. I was suppose to go to a maintance program but I am still to high. The doctor is saying I have 2 to 3 years. I am a Mother of two boys and Five Grandchildren.

    debulking
    I started posting a different thread on our friend, Gerri. She was recently diagnosed with stage 4 PPC. She has seen four gynecological oncologists. Three of the four say chemo, surgery, more chemo. One doctor thinks that because the lung is the area that lights up the pet scan, she should have a lung biopsy before starting chemo. She has signs and symptoms that point to PPC. Gerri is accepting of the chemo, but is rejecting the surgical treatment. She is asking me to find out if others have been treated successfully with chemo only. She is aware her prognosis, per the books, is approx 3 years with all treatment. Would her prognosis be the same without surgery? She is willing to fly anywhere for additional opinions. I am fearing she is seeking an answer that doesn't exist. I know if it were me, I'd be anxious to have the surgery and have them get out as much of the cancer as they can. I am checking out MD Anderson in Houston, Bringham and Women's in Boston, Sloan Nettering in New York and Mayo Clinic in Rochester. Again, she has seen a couple of the best so far, going to Rush in Chicago and Dr. Doran in Park Ridge. Please, any comments, direction is so appreciated and needed. Thanks.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    blondecat said:

    debulking
    I started posting a different thread on our friend, Gerri. She was recently diagnosed with stage 4 PPC. She has seen four gynecological oncologists. Three of the four say chemo, surgery, more chemo. One doctor thinks that because the lung is the area that lights up the pet scan, she should have a lung biopsy before starting chemo. She has signs and symptoms that point to PPC. Gerri is accepting of the chemo, but is rejecting the surgical treatment. She is asking me to find out if others have been treated successfully with chemo only. She is aware her prognosis, per the books, is approx 3 years with all treatment. Would her prognosis be the same without surgery? She is willing to fly anywhere for additional opinions. I am fearing she is seeking an answer that doesn't exist. I know if it were me, I'd be anxious to have the surgery and have them get out as much of the cancer as they can. I am checking out MD Anderson in Houston, Bringham and Women's in Boston, Sloan Nettering in New York and Mayo Clinic in Rochester. Again, she has seen a couple of the best so far, going to Rush in Chicago and Dr. Doran in Park Ridge. Please, any comments, direction is so appreciated and needed. Thanks.

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

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

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

    Much love Tina xx
  • blondecat
    blondecat Member Posts: 13

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

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

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

    Much love Tina xx

    sand like tumors
    Thanks, Tina. Like you, Gerri's tumors are undetectable via pet or cat scans. The doctors describe her tumors as "sand like". With that said, what do you think is "too tiny" for a surgery? I'm wondering if medical practice is different in the UK? This is all so confusing as you seem to have great initial results from chemo only. The surgery is a serious one, with surgeons telling Gerri it would be a 6-8 week recovery period. Carbo and taxol are the drugs recommended for Gerri as well. There are a few surgeons here to seem to be using a heated chemo approach delivered direct to the perineum after debulking surgery. Anybody have any knowledge or experience with this treatment? Thanks to all -- Donna
  • Tasgirl
    Tasgirl Member Posts: 85
    blondecat said:

    sand like tumors
    Thanks, Tina. Like you, Gerri's tumors are undetectable via pet or cat scans. The doctors describe her tumors as "sand like". With that said, what do you think is "too tiny" for a surgery? I'm wondering if medical practice is different in the UK? This is all so confusing as you seem to have great initial results from chemo only. The surgery is a serious one, with surgeons telling Gerri it would be a 6-8 week recovery period. Carbo and taxol are the drugs recommended for Gerri as well. There are a few surgeons here to seem to be using a heated chemo approach delivered direct to the perineum after debulking surgery. Anybody have any knowledge or experience with this treatment? Thanks to all -- Donna

    Hi Donna
    Sorry to hear about

    Hi Donna
    Sorry to hear about your friend. I was diagnosed with PPC3 in October 2008. I am in Australia and my gyn/onc said surgery and then chemo. I underwent the surgery as I had ascites in the abdomen and the caking had spread to my omentum/overies/fallopian tubes and appendix which were all taken during debulking surgery. The only thing that showed on my CT scan (as far as I am aware) was the ascites and my CA125 was just under 4000. I had the carbo/taxol which worked for me but 14 months after chemo I now have enlarged lymph nodes and several small nodules. Holding off on chemo as long as possible.
    If Gerri is fit and healthy she shouldn't have too much trouble with the surgery.
    Regards Jenny
  • blondecat
    blondecat Member Posts: 13
    Tasgirl said:

    Hi Donna
    Sorry to hear about

    Hi Donna
    Sorry to hear about your friend. I was diagnosed with PPC3 in October 2008. I am in Australia and my gyn/onc said surgery and then chemo. I underwent the surgery as I had ascites in the abdomen and the caking had spread to my omentum/overies/fallopian tubes and appendix which were all taken during debulking surgery. The only thing that showed on my CT scan (as far as I am aware) was the ascites and my CA125 was just under 4000. I had the carbo/taxol which worked for me but 14 months after chemo I now have enlarged lymph nodes and several small nodules. Holding off on chemo as long as possible.
    If Gerri is fit and healthy she shouldn't have too much trouble with the surgery.
    Regards Jenny

    Gerri Update
    Geri went and had a repeat of the scans last week. She was just told that a 3cm tumor is now seen on her right side. She is scheduled for debulking surgery on Monday. Biopsies will be obtained and chemo started soon after. How soon after debulking will she be strong enough for chemo? The plan is to remove the tumor, omentum, any lymph nodes and organs involved. My god. She has a large amount of fluid in the abdomen. Her lungs are clear now. Do they put a port in for drainage during the debulking surgery or is that put in after? So many questions.... so much is happening so quick.
  • Afroditi
    Afroditi Member Posts: 4
    spa said:

    PPC, stage IV
    HI,
    I was diagnosed in December, 2009 with metastatic ovarian cancer. I had a right pleural effusion that got me to the hospital. Until then, I had vague symptoms but suspected my upper abdomen looked fatter and different. This has been a fear for quite some time in all honesty. I am 55 and a nurse, so I've passed the vague symptoms off as being due to post menopause and aging.
    I received my first round of chemo while in the hospital in December to prevent the fluid from coming back around my lung. The CT scans showed caking in the omentum, but minimal disease if any in the pelvis. That's when PPC was mentioned. In January I saw a surgical oncologist who agreed with local physicians about waiting to do surgery until I had 3-4 rounds of taxol and carbonplatin. This did not bring peace to my mind, so I traveled out of state to see a surgical gyn oncologist recommended to me by a dear friend. He concurred with the care that I had received, ordered another CT scan and advised immediate expoloratory laporotomy to remove all that he could of the cancer.
    I had surgery 2/2/10 and praise the lord it did go better than expected with the majority of the cancer being in the omentum, which was removed, along with my spleen, ovaries, tubes and uterus. Two lymph nodes were removed as well. All were positive for low grade serous cells on the surface. I have just completed my 5th round of taxol/carboplatin and am contemplating Intraperitoneal chemotherapy.
    Unfortunately, there is a difference in opinions between the surgical oncologist and the medical oncologist and I am in the middle wanting desparately to do everything possible to live a long life. I believe that God has been with me through this all and will continue to guide me in seeking the best options. Most of the time I am happy and optomistic regardless of what the internet and research shows statistically. I feel great and find it so hard to believe that this disease is in my body. I hope that you all will continue to research and share what you find on this network. There is hope. New research is coming out everyday and we know that good nutrition, exercise and above all faith, is the best treatment of all.
    Dr. David McIntosh at the University of Mississippi is one of the most caring, progressive and expert GYN, surgical oncologist in the nation. I believe that I did see a comment of someone asking about a physician. It is critical that anyone facing this disease seek expert care from an oncologist specializing in this area.
    Begin each day knowing that today is a good day and there is hope. Be aggressive in seeking the best of care possible. We can beat this. God Bless.

    I had the same adventure like you my girl
    Everything started 2006 September on my birthday when they told me that I had cancer and 6-8months to live. My husband has a contract in australia and I came back home in Houston TX to visit MD Anderson when they thought both countries that I had breast cancer. after 26rounds of chemo the cancer came back for 3rd time, and now they said is peritoneal primary
    carcinoma and I have a new carcinomatosis with some fluid in my tummy. I am back on chemo with Doxil and Carbo the first round and I am hoping this time to work. I am very fit and strong and for the first 4days I had very hard times but now is getting better, but my depression is unreal and my anxiety for the unknown. I am praying to Lord tokeep alive and give me strength to face my new torture in my life, and I would like to know if there is any hope out there. I have a lady friend who achieves 4years in rem mission (after 4times the cancer to come back on a different type of cancer and that gives me some courage, but there are times which I am thinking my world is gone. I have 3kids and they are devostated
    and special my little one who is engaged, she is trying to keep me alive to see her wedding
    next year. I found hard that disease to kill me, as I am a strong character (builder) by
    trade, but I am facing the chemo alone as all the family is in Australia and Greece and
    I don't know if I have to ask second opinion, for my treatment sofar. I am 65years old and extremely fit, but my anxiety is killing me at the moment.
  • pattysoo
    pattysoo Member Posts: 170
    blondecat said:

    Gerri Update
    Geri went and had a repeat of the scans last week. She was just told that a 3cm tumor is now seen on her right side. She is scheduled for debulking surgery on Monday. Biopsies will be obtained and chemo started soon after. How soon after debulking will she be strong enough for chemo? The plan is to remove the tumor, omentum, any lymph nodes and organs involved. My god. She has a large amount of fluid in the abdomen. Her lungs are clear now. Do they put a port in for drainage during the debulking surgery or is that put in after? So many questions.... so much is happening so quick.

    When to start chemo
    Everyone is different and recovers at a different pace. I was ready (and eager) for chemo 4 weeks after surgery. I worked really hard at recovery: ate carefully, began walking right away - even if it was just half a block to begin, and rested a lot too. I had no port for drainage, the ascites were removed during surgery and then subsequent chemo prevents them from reforming (I think). Good luck.
  • blondecat
    blondecat Member Posts: 13
    pattysoo said:

    When to start chemo
    Everyone is different and recovers at a different pace. I was ready (and eager) for chemo 4 weeks after surgery. I worked really hard at recovery: ate carefully, began walking right away - even if it was just half a block to begin, and rested a lot too. I had no port for drainage, the ascites were removed during surgery and then subsequent chemo prevents them from reforming (I think). Good luck.

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