Primary Peritoneal Carcinoma

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  • shane h
    shane h Member Posts: 1
    #42
    donnalark said:

    Hello
    Are you a female? Let me know. I was diagnosed with Pariteneal Cancer in June of this year. Prior to that diagnoses I was told that I had Ovarian Cancer Stage 4. I went to a large teaching hospital in my area in December 2007 to start treatment. I was given Carboplatin and Taxol. I had 6 treatments and after a PET Scan it appeared that the chemo did not remove the cancer. My cancer metastasized. I went for another opinion and was put on another cancer drug called Gemzar. I've had 6 treatments so far and now I'm scheduled for a PET Scan the 15th of September. I'm very nervous about the outcome. I've have been told that there is no cure or remission for this type of cancer but the doctors are hoping to get my cancer into a chronic states and then keep an eye on how it progresses. I'm not very confident that they are going to achieve a good outcome.

    It's hard to face everyday and the lonely nights. My only support is my husband of 48 years. It seems that when you let your friends know you have cancer they don't know how to handle it so they back away.

    Write back when you get a chance.

    my mom
    My mom has been married to my dad 60 years she broke her leg 2 months ago and just got out of the hospital for that, During her stay in the hospital her stomach starting really swelling at least more than usual and it begin to hurt more than it has in the last year--news to us that her stomach has been hurting. she said it was because she was having problems going to the bathroom the last couple months, she got out of hospital wed by friday she was back because of the extreme pain. Now yesterday we find out she has Pariteneal Cancer stage IV. She starts chemo monday. She still cannot go to bathroom and she cannot eat its been 10 days. She is on a liquid diet they told her she has to eat and get out of bed, Its going to be youch. What can we do to help her, What would you want your family to do.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #43
    shane h said:

    my mom
    My mom has been married to my dad 60 years she broke her leg 2 months ago and just got out of the hospital for that, During her stay in the hospital her stomach starting really swelling at least more than usual and it begin to hurt more than it has in the last year--news to us that her stomach has been hurting. she said it was because she was having problems going to the bathroom the last couple months, she got out of hospital wed by friday she was back because of the extreme pain. Now yesterday we find out she has Pariteneal Cancer stage IV. She starts chemo monday. She still cannot go to bathroom and she cannot eat its been 10 days. She is on a liquid diet they told her she has to eat and get out of bed, Its going to be youch. What can we do to help her, What would you want your family to do.

    Hello Shane
    Firstly I am sorry that your mum has PPC. The pain in her tummy is probably fluid that the cancer cells give off. The fluid will make her feel uncomfortable and squash all of her organs - including her bowel. That will be why she is having problems going the the toilet. PPC is about cancer cells attaching themselves to the lining of the tummy - peritoneum. It may also squash her stomach which will making eating uncomfortable. It can't be removed by an operation because there is no tumour or lump so they will give her chemo to kill off all the cells. The good news is chemo works well (it did for me but I am a bit younger than your mum - I am 50) and as soon as the chemo starts the fluid usually goes away and so will the pain and the discomfort. I have PPC stage IV. I was diagnosed last year and I had fluid in my tummy and around my lungs. The chemo worked for me I finished it last March. However, the disease never goes away and can come back. Mine is back so I am having soem more chemo. There is lots of chemos out there so if one doesn't work there will be another one that does.

    Sorry if this is a bit long. I normally post on the OVARIAN boards as PPC is almost identical to ovarian. There are lots of other people who post on there with PPC.

    Hope your mum soon feels a bit better

    Tina xx
  • ForBenandSophia
    ForBenandSophia Member Posts: 11
    #44
    Tina Brown said:

    Hello Shane
    Firstly I am sorry that your mum has PPC. The pain in her tummy is probably fluid that the cancer cells give off. The fluid will make her feel uncomfortable and squash all of her organs - including her bowel. That will be why she is having problems going the the toilet. PPC is about cancer cells attaching themselves to the lining of the tummy - peritoneum. It may also squash her stomach which will making eating uncomfortable. It can't be removed by an operation because there is no tumour or lump so they will give her chemo to kill off all the cells. The good news is chemo works well (it did for me but I am a bit younger than your mum - I am 50) and as soon as the chemo starts the fluid usually goes away and so will the pain and the discomfort. I have PPC stage IV. I was diagnosed last year and I had fluid in my tummy and around my lungs. The chemo worked for me I finished it last March. However, the disease never goes away and can come back. Mine is back so I am having soem more chemo. There is lots of chemos out there so if one doesn't work there will be another one that does.

    Sorry if this is a bit long. I normally post on the OVARIAN boards as PPC is almost identical to ovarian. There are lots of other people who post on there with PPC.

    Hope your mum soon feels a bit better

    Tina xx

    HIPEC
    Hi Tina,

    I was just wondering if HIPEC was an option for you? My husband age 47 has Stage 4 Colon/peritoneal cancer. We just finished 8 rounds of chemo. CEA down to 3.5. Scheduled for HIPEC in December. Any feedback on the procedure? Best of luck with your chemo. He responded very well to Oxiplatin and Folfox (5FU).

    Thank you for listening,
    Erin
  • memaw8
    memaw8 Member Posts: 2
    #45
    Michele Schwarz said:

    Tina -
    Your post was
    Tina -
    Your post was inspiring!

    After a couple years of not being able to get pregnant and problem menstrual periods, a July 2009 laproscopy removed lots of scar tissue that encased my entire reproductive system. I felt better for little while. The last week of October 2009 I gained 18 pounds and was bigger than I was when I was pregnant! I went to Genesys Hospital in Michigan for a hysterectomy in Nov 2009. They recognized cancer fluid in my peritoneum, a tumor attached to my colon, several spots on my omentum/paritoneum and debulked/removed them all for biopsy. I left the hospital without any chance of more biological children, a colostomy and a diagnosis of PPC just after my 40th birthday. I had 6 rounds of Carboplatin/Taxol and my CA-125 was at 12.8. I had my colostomy reversed on June 3, 2010 and during surgery 6 "suspicious spots" were removed and sent for biopsy, 3 of them being PPC - however my CA-125 was only at 20. I see my oncologist this Tuesday, June 29, 2010 and think he will suggest more chemo. I am very nervous about the thought of more chemo and losing the eyelashes, eyebrows and tiny bit of hair that has returned. I am also worried about the affects on my family, especially my 9 year old son, Tyler who had a hard time while I was sick thru the first chemo treatments as well as struggling with his 3rd grade multiplication.

    I know I can handle more treatment if that's what is suggested, I'm scared of the survival rate of this disease and wonder if I'm making the best choice her in mid-Michigan or if I should travel to a Cancer Treatment Center of America, leaving my husband and son at a delicate time.

    Thanks for listening!

    Michelle I too have this horrible disease
    HI Michelle,
    I was reading your post and was wondering how things went for you.I just finished my 9th an last round of chemo this month and had my ct scan as well. I was told all looked ok at this point. I also live in mid Michigan and was thinking the same thing about going to a cancer treatment center as well when my ppc returns as i have been told that it will come back. I hate living with this and the survival rate scares me. I have 9 grandchildren and I just want to see them grow up but who knows if I will.
    Thanks for letting me vent a little:)!
    Ronda
    11-22-10
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #46
    ForBenandSophia said:

    HIPEC
    Hi Tina,

    I was just wondering if HIPEC was an option for you? My husband age 47 has Stage 4 Colon/peritoneal cancer. We just finished 8 rounds of chemo. CEA down to 3.5. Scheduled for HIPEC in December. Any feedback on the procedure? Best of luck with your chemo. He responded very well to Oxiplatin and Folfox (5FU).

    Thank you for listening,
    Erin

    Hi Erin
    I live in the UK and have not really heard much about HIPEC. Is it where they put the chemo straight into the abdomen? I am on my second round of chemo now after 7 months remission - carboplatin & taxol. I had a good response to it last year so I am hoping it will do its magic for me again. Was your husbands cancer stage 4 because it had gone to his peritoneum? Mine is also stage 4 because it spread from the peritoneum to the lining of my lungs.

    Tina xx
  • donnarod
    donnarod Member Posts: 6
    #47
    Tina Brown said:

    Hello Mlnurse
    You are not
    Hello Mlnurse

    You are not alone. I was diagnosed in Nov 2009 with PPC. I am a little older than you at 49. I have had 2 rounds of chemo The 3rd one this week) - Carboplatin/taxol and I try to have a positive outlook. I am nearly half way through and will be having a scan soon. I have met a lady who also had PPC 18 months ago and her CA125 is something like 18. So don't despair, my friend Teresa is in remission and whenever she has a scan & CA125 the cancer hasn't come back. She is my inspirtation & she could be yours.

    Don't give up Tina xxx

    I was diagnosed with stage
    I was diagnosed with stage IV ppc last march. It is almost a year since my debulking surgery and I am so thankful to see people like you who have survived as long as you have and all your posotive outlooks. It was a very scary thing to be told and see all of the horrible things you read on survival rates. I have 5 kids an my youngest two are 4 an 2. As a mom it is a horrible feeling to think you may leave them with no mom. I just want to say you are an inspiration of hope and I thank you. Donna
  • donnarod
    donnarod Member Posts: 6
    #48
    blue802 said:

    32mouthsSurvivor
    My name is Mary,I am 53 years old.I was diagnosed in Aug.2007,Also had my surgery that day.On Jan.16th 2011 with the help of God I will have 3 years,I had 5 masses and I was a stage 111C.In 2009 I was diagnose with stage 3 colon cancer unrelated to my PPC.I was also tested and found out I am Lynch positive,Please hang in there please,There is hope,We all have to agree on that,BE four I found this sight all i could do is feel sorry for myself and waiting to die,I don't feel like that now,I feel so great full that I am here,and I now no why,To extend my hand and reach out and help some one like you and to tell you that there is hope no matter how much time we have.We have to give each other support and be our own best friends.My name is Mary and I am a very great full cancer survivor,God Bless You All.

    Thankful
    I am so Thankful to see your status.(32 mts) is great. That is all the doctors gave me. I am happy to read about someone who had survived that long. It has been 11 months since my diagnosis and surgery. I love the picture of you and the baby. I have 5 children and I am now 40 yrs old my two youngest are 4 an 2. So as a mom my diagnosis was a horrible feeling and hard to hear. I have surched for some posotive feedback and I am just greatful to see these stories such as yours.
  • donnarod
    donnarod Member Posts: 6
    #49
    blue802 said:

    32mouthsSurvivor
    My name is Mary,I am 53 years old.I was diagnosed in Aug.2007,Also had my surgery that day.On Jan.16th 2011 with the help of God I will have 3 years,I had 5 masses and I was a stage 111C.In 2009 I was diagnose with stage 3 colon cancer unrelated to my PPC.I was also tested and found out I am Lynch positive,Please hang in there please,There is hope,We all have to agree on that,BE four I found this sight all i could do is feel sorry for myself and waiting to die,I don't feel like that now,I feel so great full that I am here,and I now no why,To extend my hand and reach out and help some one like you and to tell you that there is hope no matter how much time we have.We have to give each other support and be our own best friends.My name is Mary and I am a very great full cancer survivor,God Bless You All.

    Thankful
    I am so Thankful to see your status.(32 mts) is great. That is all the doctors gave me. I am happy to read about someone who had survived that long. It has been 11 months since my diagnosis and surgery. I love the picture of you and the baby. I have 5 children and I am now 40 yrs old my two youngest are 4 an 2. So as a mom my diagnosis was a horrible feeling and hard to hear. I have surched for some posotive feedback and I am just greatful to see these stories such as yours.
  • donnarod
    donnarod Member Posts: 6
    #50
    blue802 said:

    32mouthsSurvivor
    My name is Mary,I am 53 years old.I was diagnosed in Aug.2007,Also had my surgery that day.On Jan.16th 2011 with the help of God I will have 3 years,I had 5 masses and I was a stage 111C.In 2009 I was diagnose with stage 3 colon cancer unrelated to my PPC.I was also tested and found out I am Lynch positive,Please hang in there please,There is hope,We all have to agree on that,BE four I found this sight all i could do is feel sorry for myself and waiting to die,I don't feel like that now,I feel so great full that I am here,and I now no why,To extend my hand and reach out and help some one like you and to tell you that there is hope no matter how much time we have.We have to give each other support and be our own best friends.My name is Mary and I am a very great full cancer survivor,God Bless You All.

    Thankful
    I am so Thankful to see your status.(32 mts) is great. That is all the doctors gave me. I am happy to read about someone who had survived that long. It has been 11 months since my diagnosis and surgery. I love the picture of you and the baby. I have 5 children and I am now 40 yrs old my two youngest are 4 an 2. So as a mom my diagnosis was a horrible feeling and hard to hear. I have surched for some posotive feedback and I am just greatful to see these stories such as yours.
  • donnarod
    donnarod Member Posts: 6
    #51
    blue802 said:

    32mouthsSurvivor
    My name is Mary,I am 53 years old.I was diagnosed in Aug.2007,Also had my surgery that day.On Jan.16th 2011 with the help of God I will have 3 years,I had 5 masses and I was a stage 111C.In 2009 I was diagnose with stage 3 colon cancer unrelated to my PPC.I was also tested and found out I am Lynch positive,Please hang in there please,There is hope,We all have to agree on that,BE four I found this sight all i could do is feel sorry for myself and waiting to die,I don't feel like that now,I feel so great full that I am here,and I now no why,To extend my hand and reach out and help some one like you and to tell you that there is hope no matter how much time we have.We have to give each other support and be our own best friends.My name is Mary and I am a very great full cancer survivor,God Bless You All.

    Thankful
    I am so Thankful to see your status.(32 mts) is great. That is all the doctors gave me. I am happy to read about someone who had survived that long. It has been 11 months since my diagnosis and surgery. I love the picture of you and the baby. I have 5 children and I am now 40 yrs old my two youngest are 4 an 2. So as a mom my diagnosis was a horrible feeling and hard to hear. I have surched for some posotive feedback and I am just greatful to see these stories such as yours.
  • Shari Berry
    Shari Berry Member Posts: 1
    #52
    Tina Brown said:

    Hello Shane
    Firstly I am sorry that your mum has PPC. The pain in her tummy is probably fluid that the cancer cells give off. The fluid will make her feel uncomfortable and squash all of her organs - including her bowel. That will be why she is having problems going the the toilet. PPC is about cancer cells attaching themselves to the lining of the tummy - peritoneum. It may also squash her stomach which will making eating uncomfortable. It can't be removed by an operation because there is no tumour or lump so they will give her chemo to kill off all the cells. The good news is chemo works well (it did for me but I am a bit younger than your mum - I am 50) and as soon as the chemo starts the fluid usually goes away and so will the pain and the discomfort. I have PPC stage IV. I was diagnosed last year and I had fluid in my tummy and around my lungs. The chemo worked for me I finished it last March. However, the disease never goes away and can come back. Mine is back so I am having soem more chemo. There is lots of chemos out there so if one doesn't work there will be another one that does.

    Sorry if this is a bit long. I normally post on the OVARIAN boards as PPC is almost identical to ovarian. There are lots of other people who post on there with PPC.

    Hope your mum soon feels a bit better

    Tina xx

    Your success?
    Tina -
    I was just told today that I have peritoneal carcinoma - from the pictures they took during the laprasopy exam it looks like confetti - everything is covered in small white spots - I haven't met with the cancer specialist yet although it's said to be a stage 3!!
    I am very interested to hear which was the most successful chemo you experienced?? and how long was your treatment?? I am very fortunate that at this point I feel very healthy no other side affects other that the fluid build up which they have been draining off for 2 months!! They found no evidence of bacteria and because the CA 125 testing and the CA 19-9 testing showed minimal evidence of carcinogens and the CT scan and Ultra sound showed nothing :o) finally the did a laprascopy that wet off alarms!! I would really appreciate any words of wisdon you could share with me :o)
    With kindness
    Shari XOXOX
  • abrub
    abrub Member Posts: 2,174 Member
    #53
    Shari Berry said:

    Your success?
    Tina -
    I was just told today that I have peritoneal carcinoma - from the pictures they took during the laprasopy exam it looks like confetti - everything is covered in small white spots - I haven't met with the cancer specialist yet although it's said to be a stage 3!!
    I am very interested to hear which was the most successful chemo you experienced?? and how long was your treatment?? I am very fortunate that at this point I feel very healthy no other side affects other that the fluid build up which they have been draining off for 2 months!! They found no evidence of bacteria and because the CA 125 testing and the CA 19-9 testing showed minimal evidence of carcinogens and the CT scan and Ultra sound showed nothing :o) finally the did a laprascopy that wet off alarms!! I would really appreciate any words of wisdon you could share with me :o)
    With kindness
    Shari XOXOX

    There is now a Peritoneal Cancer Forum
    You'll get lots more information there. This thread has been quiet for a couple of years.
  • AngelElayne
    AngelElayne Member Posts: 1
    #54
    donnalark said:

    Hello
    Are you a female? Let me know. I was diagnosed with Pariteneal Cancer in June of this year. Prior to that diagnoses I was told that I had Ovarian Cancer Stage 4. I went to a large teaching hospital in my area in December 2007 to start treatment. I was given Carboplatin and Taxol. I had 6 treatments and after a PET Scan it appeared that the chemo did not remove the cancer. My cancer metastasized. I went for another opinion and was put on another cancer drug called Gemzar. I've had 6 treatments so far and now I'm scheduled for a PET Scan the 15th of September. I'm very nervous about the outcome. I've have been told that there is no cure or remission for this type of cancer but the doctors are hoping to get my cancer into a chronic states and then keep an eye on how it progresses. I'm not very confident that they are going to achieve a good outcome.

    It's hard to face everyday and the lonely nights. My only support is my husband of 48 years. It seems that when you let your friends know you have cancer they don't know how to handle it so they back away.

    Write back when you get a chance.

    Peritoneal Cancer
    Hi Donna My name is Elayne I was diagnosed with breast cancer on November 2011, but prior to that my big discomfort was in my belly, Dr decided that I was stage 4 breast cancer.
    After I underwent an unsuccessful surgery to removed the big tumors from my abdomen in April 2012 my oncologist told me that I had two types of cancer so he gave me chemo.
    I just found out from another source that I have Peritoneal cancer and when I read what you posted here, a realized that my oncologist gave me the same treatment that you had, Carboplatin & Taxol, which it made one tumor grow big & faster after 4 session of chemo, & made my CA 125 going from 437 to almost 900. The Dr stopped the chemo and by me being only on some nutritious shakes the CA 125 went 450 down!

    I still have the breast tumor, and I need treatment for that, I need to address this "new issue of the peritoneal cancer wich it spread to all of the abdomen and I have to have Paracentesis to remove the built up of fluids in the belly.

    I got the book "Healing Cancer and other Diseases the Gerson Way" which I believe is awesome tool to heal with suplements, but I would like to hear from you, what you did after this posting and what worked for you, I would really appreciate it!

    Thank you, God Bless

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