PRIMARY PERITONEAL CANCER

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Comments

  • Sharon-NC
    Sharon-NC Member Posts: 1
    Me too
    Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

    After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

    I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

    14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

    Sharon
    sharon2468@yahoo.com
    Charlotte, NC
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Sharon-NC said:

    Me too
    Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

    After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

    I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

    14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

    Sharon
    sharon2468@yahoo.com
    Charlotte, NC

    Thank-you Sharon
    Thank-you for posting your story on here, it has given me hope. I have PPC & was graded 4 as the fluid had gone into the lining of my lungs as well as having the ascites. I had my lungs drained 4 times but never needed my abdomen draining as when I started chemo it went on its own.

    My CA 125 was 1119 at diagnosis and is now 34 after finishing chemo 4 months ago. It is great to hear success stories like yours, I hope you continue to be well.

    Love Tina xx
  • McE
    McE Member Posts: 3
    Sharon-NC said:

    Me too
    Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

    After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

    I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

    14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

    Sharon
    sharon2468@yahoo.com
    Charlotte, NC

    Doing well here
    Thanks Sharon.

    More hope on this front too. I'm three months post chemo and 7 months post DX/surgery and my CA-125 is in the single digits, too. Am participating in an Avastin clinical trial which goes until next year. Am really trying to eat well, exercise several times a week, do a daily meditation and hold the holiness of life.

    I'm very aware of my new companion, my own mortality, and so make different decisions about how to live, what I'm choosing to do with each day. I did take my whole family to the beach for two weeks, something which I have so longed to do for so many years, and knowing that I am well and feeling well at the moment told me I needed to do it now.

    I have many friends who are in remission and many friends who are in a treatable but not curable stage of cancer. We are all just trying to remember that our lives, our stories are not about our illness, but about the moments of love, joy, and hope. That is the best we can do for those who love us and for ourselves, regardless of our illness.

    I am a believer that we are simply on a journey and our lives are all about the emotional/spiritual quality we choose to live with. That is the choice we get to make regardless of our physical circumstances. I am hopeful that I can hold that perspective and face any challenges that come my way.

    I support you all on your journey, and the adventure of living.

    McE
  • onewonwan
    onewonwan Member Posts: 3
    Sharon-NC said:

    Me too
    Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

    After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

    I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

    14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

    Sharon
    sharon2468@yahoo.com
    Charlotte, NC

    My mom has PPC, Stage 4, recently diagnosed, w fluid around lung
    Love this website.
    Very hopeful these stories. Thanks for posting.

    My mom has PPC, stage 4. We found out a few weeks ago after she had trouble breathing bc of fluid in her lungs. She's had two thoracenteses.

    Neither of us is really impressed w her doctor now bc of some info he's left out or glossing over of procedures.
    He also seemed really weary and closed to experimental treatments while 2 other doctors we've seen have mentioned them. We are in Baltimore.

    I'm interested in diets and treatments that ppl have tried. She just started chemo, I think carboplatin and taxol.

    Her doctor said Avastin has lots of bad side effects (like high blood pressure, bowel perforation, etc) and a higher response rate but no cure rate and has recommended against it (well more like blew it off). Our doctors haven't told us that this is incurable---while still unsure if it was ovarian or PPC, they said there's about a 16 to 20% cure rate.

    Is this true about Avastin? What are some other ppl's experiences w it?

    Also, two other doctors suggested this GOG Protocol 252, I think the drug is called Bevacizumab if I'm reading this protocol right. Any thoughts or knowledge about this?

    I appreciate this site and any comments. Since we're on the fence about this doctor, I'm hoping for some good insight from people who might know more than this guy, he's really frustrating.(Or even suggestions for docs around Maryland).

    Thanks
    Alex
  • onewonwan said:

    My mom has PPC, Stage 4, recently diagnosed, w fluid around lung
    Love this website.
    Very hopeful these stories. Thanks for posting.

    My mom has PPC, stage 4. We found out a few weeks ago after she had trouble breathing bc of fluid in her lungs. She's had two thoracenteses.

    Neither of us is really impressed w her doctor now bc of some info he's left out or glossing over of procedures.
    He also seemed really weary and closed to experimental treatments while 2 other doctors we've seen have mentioned them. We are in Baltimore.

    I'm interested in diets and treatments that ppl have tried. She just started chemo, I think carboplatin and taxol.

    Her doctor said Avastin has lots of bad side effects (like high blood pressure, bowel perforation, etc) and a higher response rate but no cure rate and has recommended against it (well more like blew it off). Our doctors haven't told us that this is incurable---while still unsure if it was ovarian or PPC, they said there's about a 16 to 20% cure rate.

    Is this true about Avastin? What are some other ppl's experiences w it?

    Also, two other doctors suggested this GOG Protocol 252, I think the drug is called Bevacizumab if I'm reading this protocol right. Any thoughts or knowledge about this?

    I appreciate this site and any comments. Since we're on the fence about this doctor, I'm hoping for some good insight from people who might know more than this guy, he's really frustrating.(Or even suggestions for docs around Maryland).

    Thanks
    Alex

    This comment has been removed by the Moderator
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    onewonwan said:

    My mom has PPC, Stage 4, recently diagnosed, w fluid around lung
    Love this website.
    Very hopeful these stories. Thanks for posting.

    My mom has PPC, stage 4. We found out a few weeks ago after she had trouble breathing bc of fluid in her lungs. She's had two thoracenteses.

    Neither of us is really impressed w her doctor now bc of some info he's left out or glossing over of procedures.
    He also seemed really weary and closed to experimental treatments while 2 other doctors we've seen have mentioned them. We are in Baltimore.

    I'm interested in diets and treatments that ppl have tried. She just started chemo, I think carboplatin and taxol.

    Her doctor said Avastin has lots of bad side effects (like high blood pressure, bowel perforation, etc) and a higher response rate but no cure rate and has recommended against it (well more like blew it off). Our doctors haven't told us that this is incurable---while still unsure if it was ovarian or PPC, they said there's about a 16 to 20% cure rate.

    Is this true about Avastin? What are some other ppl's experiences w it?

    Also, two other doctors suggested this GOG Protocol 252, I think the drug is called Bevacizumab if I'm reading this protocol right. Any thoughts or knowledge about this?

    I appreciate this site and any comments. Since we're on the fence about this doctor, I'm hoping for some good insight from people who might know more than this guy, he's really frustrating.(Or even suggestions for docs around Maryland).

    Thanks
    Alex

    Hello Alex
    Firstly welcome to these boards. I am sorry to read about your mum but WOW it is the exact same as me. I am stage 4 PPC and was diagnosed with fluid around both lungs. Had 4 chest drains and 1 plueradesis. My CA 125 was 1119 and I was put onto carboplatin/taxol the same as your mum. I had 6 rounds and my CA 125 came right down to 34 at its lowest.

    The reason the fluid was on the lungs is that the cells that are attached to the peritoneum would've somehow migrated to the lining of the lungs. Once in the lungs they weep fluid and block the drainage points. That is why the fluid stays in there. Once the chemo kicks in the body re-absorbs the fluid and your mum will be able to breathe again. I have been fluid free since Jan 10. Did your mum have fluid in her abdomen? What is her Ca 125?

    I am in the UK & I don't think we use avastin. The othjer ladies on here may be able to advise you on this drug.

    I am sorry your doctor hasn't been open with you - you must feel very scared and let down.

    PPC is rare, and the statistics are often doom and gloom because of this. I guess the ladies on here will advise you about changing your doctor and choose one who is a gynae oncologist.

    Please feel free to ask me anything. Love Tina xx
  • bigragu714
    bigragu714 Member Posts: 4
    HD1947 said:

    doctor at winthrop hosp. in mineola
    My sister-in-law has just been diagnosed. We live on long Island and are very interested in
    doctors that have had good results in treating this terrible disease.
    She means the world to our family, and we want to get her the best help available.
    If you could just give me the name of the doctor, that your mom has seen, I would be very
    grateful.

    your post
    So sorry i havent been on this site in almost a year. I saw your post regarding winthrop hospital. the Dr my mom is in love with is dr Venenella (spelling is off but sound it out) this doctor has taken such good care of my mom along with the doctors that do the chemo which are in stony brook hospital. The doctor that works with my mom for chemo is Dr Kedelka another very nice man. I know that you probably have doctors now being that your post was in Feb. but if you are not happy with your current doc and want another avenue to explore those are the 2 docs i HIGHLY rec.

    My mom was diagonosed in May 2009. she went through the debunking and 6 months of chemo. CA125 levels have been between 3 and 7 as she gets a test every month. for the last 7 months she has been on a maintence chemo (low dose 1 time every 4-5 weeks) because there was a "hot" spot still on the PET scan she got after the first 6 chemos were done. All in all right now she is doing okay. she is living her life, we have gone away on a couple of family vacations, lots of quality time and going to resturants for lunch or dinner, just enjoying all the time we can possibly enjoy. She is nervous as all hell about Nov which is her last chemo on the maintence and wonders what will be after that as we all are but none of us say it.....hope some of this info helps. and best of luck with your situation, keep the prayers and outlook growing. and most important keep her spirits up

    bigragu714@aol.com
  • blue802
    blue802 Member Posts: 17
    beth1 said:

    Hello Caryn
    I was diagnosed in July 2007. It's been a long road. I have learned to live in the moment. My Ca 125 was never elevated. It's not a good test me me either. Dr Warshal at Cooper University Hospital is my Gyn/Onc. He added a HE4 test which may or may not help diagnose a recurrence. I am scheduled for a CT scan of the chest, abdomen and pelvis next week. It's been a year since my last one. I go for internal exams every 3 months. It's really a pain in the butt. Lol. I try to keep healthy and exercise. I gained weight on chemo because of he steroids. They raised my blood sugar.
    I just went back to work part-time. I am still tired and I have some neuropathy in my hands and feet. Some days are worse than others. I also had 12 rounds of taxotere for consolidation every 4 weeks. Hang in there.
    keep in touch
    Beth

    You are not alone
    Dear Beth, My Name is Mary and i know what you are going though,At the time i was diagnose I felt all alone,I could not find one person with PPC,even the cancer foundation could not find someone to talk to that had the same cancer as myself.I was diagnose with PPC in Aug.2007 and had my surgery with DR Warshal at cooper hospital and my chemo therapy also with Dr. Warshal.I am still in remission.In 2009 i had colon cancer and went though chemo therapy again but it was not as hard as my first.I wish you luck on your cat scan and i will keep all of you in my prays.We all have been though hell and back,but were hear now,I no longer look at what kind of cancer i have because we all are fighting for our life and we are all scared and we all want the same thing to keep living,We all no what it feels like to be told that we have cancer and we all suffer.I love you all please keep in touch because i need you all.I am new at this,I found this web sight last week and i am so great full Love Mary also blue802@aol.com God Bless You All Mary PPC stage 111C also colon cancer stage 3
  • Gayle.Rocks
    Gayle.Rocks Member Posts: 1
    onewonwan said:

    My mom has PPC, Stage 4, recently diagnosed, w fluid around lung
    Love this website.
    Very hopeful these stories. Thanks for posting.

    My mom has PPC, stage 4. We found out a few weeks ago after she had trouble breathing bc of fluid in her lungs. She's had two thoracenteses.

    Neither of us is really impressed w her doctor now bc of some info he's left out or glossing over of procedures.
    He also seemed really weary and closed to experimental treatments while 2 other doctors we've seen have mentioned them. We are in Baltimore.

    I'm interested in diets and treatments that ppl have tried. She just started chemo, I think carboplatin and taxol.

    Her doctor said Avastin has lots of bad side effects (like high blood pressure, bowel perforation, etc) and a higher response rate but no cure rate and has recommended against it (well more like blew it off). Our doctors haven't told us that this is incurable---while still unsure if it was ovarian or PPC, they said there's about a 16 to 20% cure rate.

    Is this true about Avastin? What are some other ppl's experiences w it?

    Also, two other doctors suggested this GOG Protocol 252, I think the drug is called Bevacizumab if I'm reading this protocol right. Any thoughts or knowledge about this?

    I appreciate this site and any comments. Since we're on the fence about this doctor, I'm hoping for some good insight from people who might know more than this guy, he's really frustrating.(Or even suggestions for docs around Maryland).

    Thanks
    Alex

    Mom was just diagnosed yesterday with PPC
    My mother has been suffering with abdominal pain for months and her PCP gave her medication for heartburn. Finally, after draining 4 liters of fluid from her abdomen and finding cancer cells, going through a battery of tests, finally getting a PET/CT, she was diagnosed with PPC yesterday.
    We are in the midst of getting a referral to a GYN Oncologist and getting our first appointment and treatment plan.
    I am so grateful that in my investigation of this disease, I found this site. What a godsend you all are for me. This is so scary – Maybe you can help me.
    I plan go accompany my mother and father to her first few appointments as they have a tendency not to ask questions and forget what they were told. I know that they think I’m treating them like children, but secretly, I think my mother is glad that I’m coming along.
    I wanted to ask your advice. What questions should I be asking? I’m hearing lingo on this site that I don’t understand. For example: What is Ca-125? I need to be prepared because I know that I’m being relied on and I don’t want to let my mother down.
    Mom was 79 last month – I see on this site that many of you are younger than I am – Can I hold out hope that my mother will survive this? Is this genetic? How should my sister and I watch out for this cancer?
    I appreciate anything that you can do to help us.
    XOXOXO
    Gayle
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    Mom was just diagnosed yesterday with PPC
    My mother has been suffering with abdominal pain for months and her PCP gave her medication for heartburn. Finally, after draining 4 liters of fluid from her abdomen and finding cancer cells, going through a battery of tests, finally getting a PET/CT, she was diagnosed with PPC yesterday.
    We are in the midst of getting a referral to a GYN Oncologist and getting our first appointment and treatment plan.
    I am so grateful that in my investigation of this disease, I found this site. What a godsend you all are for me. This is so scary – Maybe you can help me.
    I plan go accompany my mother and father to her first few appointments as they have a tendency not to ask questions and forget what they were told. I know that they think I’m treating them like children, but secretly, I think my mother is glad that I’m coming along.
    I wanted to ask your advice. What questions should I be asking? I’m hearing lingo on this site that I don’t understand. For example: What is Ca-125? I need to be prepared because I know that I’m being relied on and I don’t want to let my mother down.
    Mom was 79 last month – I see on this site that many of you are younger than I am – Can I hold out hope that my mother will survive this? Is this genetic? How should my sister and I watch out for this cancer?
    I appreciate anything that you can do to help us.
    XOXOXO
    Gayle

    Hello Gayle
    Firstly I am sorry that your mum has been diagnosed with PPC. As you may have read, I too was diagnosed with PPC Nov 09.

    CA 125 - is the tumour marker. The cancer cells give off a protein (I think) that goes into the blood system. The normal range for someone without PPC is between 0 - 35. Mine was 1119 at dianosis & sometimes I have read of other ladies being much higher than that. As your mum has treatment the numbers will fall & the doctors will use this as a guide to see how well your mum responds to the treatment.

    I am 50 and yes I am afraid this cancer can be genetic. It is linked to ovarian and breast cancer and some ladies have the gene mutation BRCA 1 or BRCA 2. Your mum can be tested for this and if she is positive you & your sister can also get tested.

    Some advice that was told to me "The beginning bit is the scariest" It must all seem like a bad dream for you all because as soon as someone is diagnosed with cancer everything happens at top speed. Try to come on here and post questions as that will help you to come to terms with what is happening.

    It is good you are going with your parents to the hospital. Everything will be strange and your mum or dad may forget things. My son's girlfriend came with me once and took notes because there was so much information I couldn't take it all in.

    I wish you all well. Please keep posting so we know how you all are.

    Tina xx
  • confuzzled
    confuzzled Member Posts: 21

    Hello Gayle
    Firstly I am sorry that your mum has been diagnosed with PPC. As you may have read, I too was diagnosed with PPC Nov 09.

    CA 125 - is the tumour marker. The cancer cells give off a protein (I think) that goes into the blood system. The normal range for someone without PPC is between 0 - 35. Mine was 1119 at dianosis & sometimes I have read of other ladies being much higher than that. As your mum has treatment the numbers will fall & the doctors will use this as a guide to see how well your mum responds to the treatment.

    I am 50 and yes I am afraid this cancer can be genetic. It is linked to ovarian and breast cancer and some ladies have the gene mutation BRCA 1 or BRCA 2. Your mum can be tested for this and if she is positive you & your sister can also get tested.

    Some advice that was told to me "The beginning bit is the scariest" It must all seem like a bad dream for you all because as soon as someone is diagnosed with cancer everything happens at top speed. Try to come on here and post questions as that will help you to come to terms with what is happening.

    It is good you are going with your parents to the hospital. Everything will be strange and your mum or dad may forget things. My son's girlfriend came with me once and took notes because there was so much information I couldn't take it all in.

    I wish you all well. Please keep posting so we know how you all are.

    Tina xx

    I am thrilled to find this site!!!
    Hi everyone I too have been diagnosed with PPC. I have recently found out that I am platinum resistant, which means that the carbo/toxil mix did not work for me. I just received this diagnosis 2 weeks ago. I have never been so depressed in my entire life! I was told by a gyn oncologist that I was a perfect candidate for a new clinical trial only to find out that I wasn't because they will not perform the debulking surgery due to fluid and nodules in my lungs. To say that I am terrified is an understatement. I have an appointment tomorrow, with my regular oncologist, to discuss the Doxcil treatments that they are going to start me on next. I hope that this next round of treatments will finally start to reduce the cancer. I am getting married next June and I hope to be able to celebrate not only my marriage to a wonderful man but also my life.

    Thanks for listening.

    Jane
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    I am thrilled to find this site!!!
    Hi everyone I too have been diagnosed with PPC. I have recently found out that I am platinum resistant, which means that the carbo/toxil mix did not work for me. I just received this diagnosis 2 weeks ago. I have never been so depressed in my entire life! I was told by a gyn oncologist that I was a perfect candidate for a new clinical trial only to find out that I wasn't because they will not perform the debulking surgery due to fluid and nodules in my lungs. To say that I am terrified is an understatement. I have an appointment tomorrow, with my regular oncologist, to discuss the Doxcil treatments that they are going to start me on next. I hope that this next round of treatments will finally start to reduce the cancer. I am getting married next June and I hope to be able to celebrate not only my marriage to a wonderful man but also my life.

    Thanks for listening.

    Jane

    Hi Jane
    I think I have replied to you on facebook? :) I too have PPC & had fluid around my lungs when I was first diagnosed. I think I had very small nodules also but since I finished chemo (carbo/taxol) the fluid has kept away. Did you have to have a chest drain? I wish you loads of luck. Please start a new thread that will be easier for people to find and reply to you. Please don't be too terrified, this cancer is scary cos it can't be cured but it can be kept under control. I have a friend with this cancer who is 3 years into remission. She had 1round of chemo and has not had any reccurance since.

    Take care Tina xx
  • ConfusedPPC
    ConfusedPPC Member Posts: 3

    Hi Jane
    I think I have replied to you on facebook? :) I too have PPC & had fluid around my lungs when I was first diagnosed. I think I had very small nodules also but since I finished chemo (carbo/taxol) the fluid has kept away. Did you have to have a chest drain? I wish you loads of luck. Please start a new thread that will be easier for people to find and reply to you. Please don't be too terrified, this cancer is scary cos it can't be cured but it can be kept under control. I have a friend with this cancer who is 3 years into remission. She had 1round of chemo and has not had any reccurance since.

    Take care Tina xx

    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
  • onewonwan
    onewonwan Member Posts: 3

    Hello Alex
    Firstly welcome to these boards. I am sorry to read about your mum but WOW it is the exact same as me. I am stage 4 PPC and was diagnosed with fluid around both lungs. Had 4 chest drains and 1 plueradesis. My CA 125 was 1119 and I was put onto carboplatin/taxol the same as your mum. I had 6 rounds and my CA 125 came right down to 34 at its lowest.

    The reason the fluid was on the lungs is that the cells that are attached to the peritoneum would've somehow migrated to the lining of the lungs. Once in the lungs they weep fluid and block the drainage points. That is why the fluid stays in there. Once the chemo kicks in the body re-absorbs the fluid and your mum will be able to breathe again. I have been fluid free since Jan 10. Did your mum have fluid in her abdomen? What is her Ca 125?

    I am in the UK & I don't think we use avastin. The othjer ladies on here may be able to advise you on this drug.

    I am sorry your doctor hasn't been open with you - you must feel very scared and let down.

    PPC is rare, and the statistics are often doom and gloom because of this. I guess the ladies on here will advise you about changing your doctor and choose one who is a gynae oncologist.

    Please feel free to ask me anything. Love Tina xx

    Hi thank you both for the
    Hi thank you both for the responses, I definitely have been using these bits of info to further educated myself and research more.

    Update is my mom responded overwhelmingly well to her first few rounds of chemo and we're all hopeful. So far the biggest snags are the sickness after chemo (mostly bc of the shot they have to give give to get her white blood cells going again the day after chemo) and not having hair--she's not really sure how to do a headscarf or wig and feel good about it.

    Thanks so much for the feedback and support. I hope things continue to go well with you and with my mom.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    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

    Hello Hannah
    Sorry to hear of your mum's illness. I guess she is on carboplatin and maybe taxol? Her CA125 is quite low which is a positive sign. I too have PPC & my CA125 was 1119 when I was diagnosed. The chemo is like a poison so I guess her body will react to that. Let the nurses and doctors know all about her symtoms and they should be able to do something about it. I had anti-sickness meds. Chemo sometimes causes diarhoea so I am sure the nurses can give her something for that. My chemo was every 3 weeks too and I had 6 lots altogether. If your mum is on taxol then yes she will loose her hair. It will start to come out 3 weeks after the first chemo.

    Unfortunately PPC can't be cured but the chemo can control it. I have a friend with PPC who has been in remission for 3 years. With me, I felt ill a few days after my chemo. After about 3-4 days I was my old self again and was able to get on with my normal life. However, the chemo is accumulative so with each one you feel a little more ill. By the time my sixth one came around I felt pretty ill (just felt poorly but not sick or anything) and used to stay in bed when I felt ill. The thing with me was the fatigue & I used to give in to it and go to bed or lie on the sofa.

    I wouldn't choose NOT TO HAVE CHEMO. The chemo is not so bad and do not dread the thought of having to have it again. It is bearable.

    I hope this has helped. Please post again so we know how your mum is doing.

    Tina xx
  • ConfusedPPC
    ConfusedPPC Member Posts: 3

    Hello Hannah
    Sorry to hear of your mum's illness. I guess she is on carboplatin and maybe taxol? Her CA125 is quite low which is a positive sign. I too have PPC & my CA125 was 1119 when I was diagnosed. The chemo is like a poison so I guess her body will react to that. Let the nurses and doctors know all about her symtoms and they should be able to do something about it. I had anti-sickness meds. Chemo sometimes causes diarhoea so I am sure the nurses can give her something for that. My chemo was every 3 weeks too and I had 6 lots altogether. If your mum is on taxol then yes she will loose her hair. It will start to come out 3 weeks after the first chemo.

    Unfortunately PPC can't be cured but the chemo can control it. I have a friend with PPC who has been in remission for 3 years. With me, I felt ill a few days after my chemo. After about 3-4 days I was my old self again and was able to get on with my normal life. However, the chemo is accumulative so with each one you feel a little more ill. By the time my sixth one came around I felt pretty ill (just felt poorly but not sick or anything) and used to stay in bed when I felt ill. The thing with me was the fatigue & I used to give in to it and go to bed or lie on the sofa.

    I wouldn't choose NOT TO HAVE CHEMO. The chemo is not so bad and do not dread the thought of having to have it again. It is bearable.

    I hope this has helped. Please post again so we know how your mum is doing.

    Tina xx

    Good to hear from you
    Many thanks Tina for the valuable info you've posted.

    I checked and you're right, she is on carboplatin 550mg and taxol 330mg. Does this sound right? She's also been given sickness tablet, so that's better now. But she hasn't been eating, so she was admitted to hospital again to check her immune system, apparently chemo affects white blood cells too? she's now on a drip, so she's a bit better.

    does chemo cause any permanent side affects? such as not being able to walk etc?

    She also, has a couple of small areas on her liver, guessing that it has spread from her peritonea to her liver? would chemo treat all areas?

    Thanks so much for your help. So how long have you been on remission now? and would you be needing more chemo? how often do you have to go for checkups? I am guessing that's blood tests and ct scans?

    hope you get well soon.

    regards
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    Good to hear from you
    Many thanks Tina for the valuable info you've posted.

    I checked and you're right, she is on carboplatin 550mg and taxol 330mg. Does this sound right? She's also been given sickness tablet, so that's better now. But she hasn't been eating, so she was admitted to hospital again to check her immune system, apparently chemo affects white blood cells too? she's now on a drip, so she's a bit better.

    does chemo cause any permanent side affects? such as not being able to walk etc?

    She also, has a couple of small areas on her liver, guessing that it has spread from her peritonea to her liver? would chemo treat all areas?

    Thanks so much for your help. So how long have you been on remission now? and would you be needing more chemo? how often do you have to go for checkups? I am guessing that's blood tests and ct scans?

    hope you get well soon.

    regards

    Hi ConfusedPPC
    I am going to reply to you using a new thread as there are over 70 messages here and it is hard to find things.

    Tina
  • ginacook
    ginacook Member Posts: 6

    Hi ConfusedPPC
    I am going to reply to you using a new thread as there are over 70 messages here and it is hard to find things.

    Tina

    PPC
    Hi Tina
    I am new at this. My Mom was just diagnosed Sept. 2010 and has had one treatment of carboplatin. Can I share her history?
    86 yr old female in really good health
    no previous medical problems except HBP and COPD and a slight heart murmur
    began feeling "full' toward the end of July. Had some Shortness of breath just prior to that. Went to see family pract on the 28th of July and on the 7th of Sept. Her family doc thought she was just obstructed but decided to do CT scan anyway which showed ascites(Sept 9)
    Parasynthesis performed and 3.5 liters of fluid drawn off (Sept 10)
    CA-125 was 1100 other lab was generally normal
    Fluid cytology was positive for adeno-carcinoma cells--origin could not be traced. No masses found on CT
    Diagnosed as Possibly ovarian or primary peritoneal carcinoma ---Dr. at West Clinic-Memphis,is treating her for Primary Peritoneal since he thinks that is what she has, but does not know 100% for sure
    Had a good EF about 68%
    Had her first chemo (carboplatin) on the 17th and has lost 23-25 lbs of fluid since then. Is feeling relatively well. Goes for 2nd treatment on the 8th.
    Dr. Tillmanns (gyn/onc) at West clinic has suggested that she also be given taxotere at the next treatment and has mentioned debulking surgery.
    Our question is how would she do with just treatments? Could that one treatment send her into remission? What is the normal course? Has anyone on this blog not had the debulking surgery and how are you?
    thanks for listening Also, What is a new thread and how is that done? Can I go to the facebook page?
    Gina
  • saundra
    saundra Member Posts: 1,370 Member
    ginacook said:

    PPC
    Hi Tina
    I am new at this. My Mom was just diagnosed Sept. 2010 and has had one treatment of carboplatin. Can I share her history?
    86 yr old female in really good health
    no previous medical problems except HBP and COPD and a slight heart murmur
    began feeling "full' toward the end of July. Had some Shortness of breath just prior to that. Went to see family pract on the 28th of July and on the 7th of Sept. Her family doc thought she was just obstructed but decided to do CT scan anyway which showed ascites(Sept 9)
    Parasynthesis performed and 3.5 liters of fluid drawn off (Sept 10)
    CA-125 was 1100 other lab was generally normal
    Fluid cytology was positive for adeno-carcinoma cells--origin could not be traced. No masses found on CT
    Diagnosed as Possibly ovarian or primary peritoneal carcinoma ---Dr. at West Clinic-Memphis,is treating her for Primary Peritoneal since he thinks that is what she has, but does not know 100% for sure
    Had a good EF about 68%
    Had her first chemo (carboplatin) on the 17th and has lost 23-25 lbs of fluid since then. Is feeling relatively well. Goes for 2nd treatment on the 8th.
    Dr. Tillmanns (gyn/onc) at West clinic has suggested that she also be given taxotere at the next treatment and has mentioned debulking surgery.
    Our question is how would she do with just treatments? Could that one treatment send her into remission? What is the normal course? Has anyone on this blog not had the debulking surgery and how are you?
    thanks for listening Also, What is a new thread and how is that done? Can I go to the facebook page?
    Gina

    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
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    ginacook said:

    PPC
    Hi Tina
    I am new at this. My Mom was just diagnosed Sept. 2010 and has had one treatment of carboplatin. Can I share her history?
    86 yr old female in really good health
    no previous medical problems except HBP and COPD and a slight heart murmur
    began feeling "full' toward the end of July. Had some Shortness of breath just prior to that. Went to see family pract on the 28th of July and on the 7th of Sept. Her family doc thought she was just obstructed but decided to do CT scan anyway which showed ascites(Sept 9)
    Parasynthesis performed and 3.5 liters of fluid drawn off (Sept 10)
    CA-125 was 1100 other lab was generally normal
    Fluid cytology was positive for adeno-carcinoma cells--origin could not be traced. No masses found on CT
    Diagnosed as Possibly ovarian or primary peritoneal carcinoma ---Dr. at West Clinic-Memphis,is treating her for Primary Peritoneal since he thinks that is what she has, but does not know 100% for sure
    Had a good EF about 68%
    Had her first chemo (carboplatin) on the 17th and has lost 23-25 lbs of fluid since then. Is feeling relatively well. Goes for 2nd treatment on the 8th.
    Dr. Tillmanns (gyn/onc) at West clinic has suggested that she also be given taxotere at the next treatment and has mentioned debulking surgery.
    Our question is how would she do with just treatments? Could that one treatment send her into remission? What is the normal course? Has anyone on this blog not had the debulking surgery and how are you?
    thanks for listening Also, What is a new thread and how is that done? Can I go to the facebook page?
    Gina

    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