PRIMARY PERITONEAL CANCER

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Comments

  • pattysoo
    pattysoo Member Posts: 170
    #122
    jamesinfantry said:

    my mother

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

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

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

    Thank you,

    James

    PPC

    I'd recommend having a second opinion at Dana Farber. She's got time for that, and you may find a better treatment. By that I mean a treatment that she prefers. She's in Boston anyway, so it would be relatively simple to go to Dana Farber. Be sure whoever does her surgery is a gynecological oncologist.

  • wholfmeister
    wholfmeister Member Posts: 315
    #123
    jamesinfantry said:

    my mother

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

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

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

    Thank you,

    James

    CSN Email

    Hi, James!  I sent you a private message by email.  On the left-hand menu list, you'll see "CNS Email."

    Wholfmeister

  • cannycaz
    cannycaz Member Posts: 5
    #124
    Tina Brown said:

    Hiya McE
    I too have PPC & was diagnosed Nov 2009. I do feel like you some time, as I think "what on earth has happened to me?" However I have a girlfriend who I met just before I was diagnosed who had also had PPC. She was diagnosed this time 3 years ago and finished her chemo Sept 2007. She is alive and really well - living life to the full and is my inspiration. She is now on 6 monthly check ups and her latest CA 125 this Monday was 7. How great is that. My last one was 65 as I finished chemo March 26th. I will get my baseline reading in June.

    Having PPC is not a death sentence as my friend Teresa proves. She doean't think about it until the day of her check up. So we can all beat this the same as my friend.

    Take care & good luck. Tina x

    Hello I have been reding your

    Hello I have been reding your stories on here, very similar to my lovely mum who was diagnosed a few weeks ago. I would love to talk to you

  • Missy56
    Missy56 Member Posts: 1
    #125
    Christina_31 said:

    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

    Good cancer facility

    Christina,

    I live in georgia but went to MD Anderson in Houston, Texas for my surgery. Great dr. I would recommend.

  • family123
    family123 Member Posts: 1
    #126
    bigragu714 said:

    PPC
    Hello everyone, my mom who is 59 yrs young was diagnoised with PPC in late april, had the surgury to remove everything in early may. They put a port in her body and gave her an aggressive type of chemo which seemed to be working really good. her ca 125 number went from a high of 125 (after surgery number) to 37. or something like that. unfortunately her body rejected the port. she had a total hysteretimy and the cancer that lined her peritoneum didnt get into any organs and all her lymph nodes were 100 percent clean.

    I have tried looking for infomation on this horrific disease but i cant seem to find anything of substance. i find the same old same old "goes into remission and comes back within 5yrs or so....when i found this site and read some of your messages, it actually gave me some hope.

    what i have learned over the past couple of months is that there is hope. more than i thought. after the chemo is over (hopefully sometime soon) she may go to another type of chemo or possibly a matience plan which would be a lower dose of some chemo once a month to keep it at bay. For those of you seeking a second opinion my mom raves about her doctor from winthrop hospital in Long island ny. i was against her going there but ultimately it was her descision and i am sure glad she went there as well. from what i understand she has one of the best doctors for this type of cancer.

    my question for you is this. my mom was always over weight. with the chemo she is now getting, the side effects are minimal compared to the "port" chemo. the doctors told us she needed to have a special diet where she could not eat any left overs or eat anything like mustard or mayo ketchup unless it was from an individual packet. something about bacteria forming. things like OJ. she cant have that unless she has an individual one. foods high in protien....no anti oxidents....what kind of foods do you guys eat? what do u stay away from? i keep catching my mom eating stuff she isnt supposed to and i feel bad when i give her the 3rd degree. she got a list of food from the doctor but nothing too exact. any help on this would be appreciated.

    Im just trying to do the right thing and we are all keeping her positive and even making her happy. My family has always been a sorta disfunctional family because of the relationship between myself my brother and father, but we have all done our best to put that all behind us and my mother hasnt been this happy in a long time, if that makes any sense. so with that we keep doing what we are doing and the faily has sorta mended....that i hope in itself will aid her in beating this disease. sorry for going on so long, there is so much i want to say but dont know how to get out.

    thanks for any help anyone can give me such as websites or links.

    PPC

    Hi Bigragu714,

    I hope things are ok for you and your family.  I'm referring to a post you made in Aug 2009, and i hope the years since then have been kind to you.  I was wondering if you can tell me the name of the doctor you referenced from Winthrop hospital on Long Island.  My mom was diagnosed with PPC just about a year ago and has been undergoing chemo which was working up until recently.  Her tumors are now growing again, and i think we need a second opinion now.  Her doctor suggested debulking surgery, but my mom is scared to undergoe that surgery and is resistent to it.  Trying to figure out all our options - quickly.

    Thanks for any guidance you, or anyone else, can provide. 

  • Alexandra
    Alexandra Member Posts: 1,308
    #127
    family123 said:

    PPC

    Hi Bigragu714,

    I hope things are ok for you and your family.  I'm referring to a post you made in Aug 2009, and i hope the years since then have been kind to you.  I was wondering if you can tell me the name of the doctor you referenced from Winthrop hospital on Long Island.  My mom was diagnosed with PPC just about a year ago and has been undergoing chemo which was working up until recently.  Her tumors are now growing again, and i think we need a second opinion now.  Her doctor suggested debulking surgery, but my mom is scared to undergoe that surgery and is resistent to it.  Trying to figure out all our options - quickly.

    Thanks for any guidance you, or anyone else, can provide. 

    Family123

    It's a very old thread. Bigragu714 last logged on to this site in 2011. You are more likely to receive replies if you start a new topic on Ovarian Cancer or Peritoneal Cancer boards.

    Best wishes to your mom.

  • bleusunn
    bleusunn Member Posts: 6
    #128
    Primary Peritoneal Cancer

    Hello chicagocx,

    Yes I agree, I can not find a lot on this cancer as well.  I guess it is a rare type compared to ovarian cancer.

    You are young for this!  I read somewhere that the primary peritoneal type is linked to older people.  Which I am, I have a son your age. 

    Since this is a unique type I am nervous about finding the right treatment.  I am fortunate to be near Lexington Kentucky, and the Markey Cancer Center there is well known for care involving GI, Neuroendocrine/Carcinoid cases.  Dr. Lowell Anthony, MD, FACP is head of the program there.  I am not in a clinical study, but I hope to be if I am contacted.

    I was diagnosed with carcinoid tumors blocking my small intestine in 2007.  I had a resection, everything went well, and no cancer then.  I was screened for the next three years, and I was back to health.  This July I had symptoms of abdominal pain, lots of burping and uncomfortable when I layed down.  It felt just like 2007, so I feared that and went to emergency in the morning.  Sure enough, they found a tumor, this time in my abdomen wall and after a biopsy it showed cancer on the tumor and scattered about my abdomin.

    In August I saw Dr. Anothony and he was surprised that it was almost seven years to the date of my intestinal blockage that this tumor and cancer had appeared.  You probably know the carcincoid tumors are slow growing.  I was of course shocked, and the cancer was very unexpected.

    Right now I am on Sandostatin LAR injections into the muscle every 4 weeks.  My first screening since July will be in 2 weeks to see how this drug has affected my condition. 

    I guess it is a process to learn as we go, no two people will be the same.  However, doctors do differ in how they see treatment. 

    We'll see if I will go back to oral chemo.  I could not take the original cancer program that Norton Hospital gave me.  The chemo ruined my blood levels and I had difficulty, but now back to normal.  As you know, because the cancer is spread around in the abdomin it is difficult to treat.  I feel okay, eating good and sleeping.  Just the typical joint pain, bloating sometimes so I have to watch what I eat.  The carcinoid tumors put too much seritonin into the body and it causes hormonal imbalances, so you are tired easily, have hot flashes and frequent urniation.

    Tell me about your treatment.  Do you have carcinoids as well?

    Good luck to you.  I am a new member to the site.  Please write me let me know how you are doing.

    bleusunn 

  • stella65
    stella65 Member Posts: 152
    #129
    bleusunn said:

    Primary Peritoneal Cancer

    Hello chicagocx,

    Yes I agree, I can not find a lot on this cancer as well.  I guess it is a rare type compared to ovarian cancer.

    You are young for this!  I read somewhere that the primary peritoneal type is linked to older people.  Which I am, I have a son your age. 

    Since this is a unique type I am nervous about finding the right treatment.  I am fortunate to be near Lexington Kentucky, and the Markey Cancer Center there is well known for care involving GI, Neuroendocrine/Carcinoid cases.  Dr. Lowell Anthony, MD, FACP is head of the program there.  I am not in a clinical study, but I hope to be if I am contacted.

    I was diagnosed with carcinoid tumors blocking my small intestine in 2007.  I had a resection, everything went well, and no cancer then.  I was screened for the next three years, and I was back to health.  This July I had symptoms of abdominal pain, lots of burping and uncomfortable when I layed down.  It felt just like 2007, so I feared that and went to emergency in the morning.  Sure enough, they found a tumor, this time in my abdomen wall and after a biopsy it showed cancer on the tumor and scattered about my abdomin.

    In August I saw Dr. Anothony and he was surprised that it was almost seven years to the date of my intestinal blockage that this tumor and cancer had appeared.  You probably know the carcincoid tumors are slow growing.  I was of course shocked, and the cancer was very unexpected.

    Right now I am on Sandostatin LAR injections into the muscle every 4 weeks.  My first screening since July will be in 2 weeks to see how this drug has affected my condition. 

    I guess it is a process to learn as we go, no two people will be the same.  However, doctors do differ in how they see treatment. 

    We'll see if I will go back to oral chemo.  I could not take the original cancer program that Norton Hospital gave me.  The chemo ruined my blood levels and I had difficulty, but now back to normal.  As you know, because the cancer is spread around in the abdomin it is difficult to treat.  I feel okay, eating good and sleeping.  Just the typical joint pain, bloating sometimes so I have to watch what I eat.  The carcinoid tumors put too much seritonin into the body and it causes hormonal imbalances, so you are tired easily, have hot flashes and frequent urniation.

    Tell me about your treatment.  Do you have carcinoids as well?

    Good luck to you.  I am a new member to the site.  Please write me let me know how you are doing.

    bleusunn 

    Just want to point out...........

    That this thread was started over 5 years ago bleausunn, there is a disscusion board for peritoneal cancer but it is not very active, like you say this is a rare cancer, I wish you well X

  • seatown
    seatown Member Posts: 261 Member
    #130
    bleusunn said:

    Primary Peritoneal Cancer

    Hello chicagocx,

    Yes I agree, I can not find a lot on this cancer as well.  I guess it is a rare type compared to ovarian cancer.

    You are young for this!  I read somewhere that the primary peritoneal type is linked to older people.  Which I am, I have a son your age. 

    Since this is a unique type I am nervous about finding the right treatment.  I am fortunate to be near Lexington Kentucky, and the Markey Cancer Center there is well known for care involving GI, Neuroendocrine/Carcinoid cases.  Dr. Lowell Anthony, MD, FACP is head of the program there.  I am not in a clinical study, but I hope to be if I am contacted.

    I was diagnosed with carcinoid tumors blocking my small intestine in 2007.  I had a resection, everything went well, and no cancer then.  I was screened for the next three years, and I was back to health.  This July I had symptoms of abdominal pain, lots of burping and uncomfortable when I layed down.  It felt just like 2007, so I feared that and went to emergency in the morning.  Sure enough, they found a tumor, this time in my abdomen wall and after a biopsy it showed cancer on the tumor and scattered about my abdomin.

    In August I saw Dr. Anothony and he was surprised that it was almost seven years to the date of my intestinal blockage that this tumor and cancer had appeared.  You probably know the carcincoid tumors are slow growing.  I was of course shocked, and the cancer was very unexpected.

    Right now I am on Sandostatin LAR injections into the muscle every 4 weeks.  My first screening since July will be in 2 weeks to see how this drug has affected my condition. 

    I guess it is a process to learn as we go, no two people will be the same.  However, doctors do differ in how they see treatment. 

    We'll see if I will go back to oral chemo.  I could not take the original cancer program that Norton Hospital gave me.  The chemo ruined my blood levels and I had difficulty, but now back to normal.  As you know, because the cancer is spread around in the abdomin it is difficult to treat.  I feel okay, eating good and sleeping.  Just the typical joint pain, bloating sometimes so I have to watch what I eat.  The carcinoid tumors put too much seritonin into the body and it causes hormonal imbalances, so you are tired easily, have hot flashes and frequent urniation.

    Tell me about your treatment.  Do you have carcinoids as well?

    Good luck to you.  I am a new member to the site.  Please write me let me know how you are doing.

    bleusunn 

    We need to update the PPC forum!

    Hello, Bleusunn--

    So sorry to hear of your diagnosis. I too was diagnosed with primary peritoneal cancer, in my case Stage IV about 26 months ago.

    Let's do a favor to ourselves & all the others suffering from this rare cancer & try to keep the peritoneal cancer forum more up-to-date. I admit, I've haven't been posting there lately. As was pointed out, this thread is very old. In fact, reading back thru it, I grew sad seeing posts from Tina Brown (no, not that Tina Brown). Tina was the one who got the peritoneal cancer forum going, keeping us PPC patients from having to be lumped into "other cancers." 

    I'm going over to the peritoneal cancer forum to post right now. In the meantime, my last 2+ years are described at

    http://www.CaringBridge.org/visit/CaroleSeaton

    All best wishes!

     

  • Hoggardz
    Hoggardz Member Posts: 2
    #131
    Christina_31 said:

    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

    Peritoneal and Treatment center

    Hello Christina

    I hope you are doing good. My wife who is 47 has been diagnozed with Peritoneal last december. She has undergone a major surgery and now under chimo treament at NY Medical Cancer center. She has a superb Doctor and staff caring for her. I am very happy with them. They really take a good care of her. I can provide you with details if you wish.

    Good bless you

    Mourad

  • sid1982
    sid1982 Member Posts: 2
    #132
    amco35 said:

    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

    PPC - Your Aunt

    Hi Amco, How is your aunt doing? Has she recovered back ? Please do let me know.

     

    Thanks

    BR

    Sid

  • Nikkio02
    Nikkio02 Member Posts: 3
    #133
    Primary peritoneal cancer

    I saw your post regarding the primary peritoneal cancer. My mom was just diagnosed. Feel so lost.. How are you doing? Looking for some insite and guidance from someone who has been there..

     

     

  • jaymiecindy
    jaymiecindy Member Posts: 6
    #134
    Nikkio02 said:

    Primary peritoneal cancer

    I saw your post regarding the primary peritoneal cancer. My mom was just diagnosed. Feel so lost.. How are you doing? Looking for some insite and guidance from someone who has been there..

     

     

    here to talk

    Hi Nikkio02,

    i'm here to talk. my mom diagnosed last year. she was doing great and now her CA 125 rising again. It's so frustrating. I have posted a few times on the Primary Peritoneal thread as well. I'm here if you need to talk. 

     

  • Tinker06
    Tinker06 Member Posts: 7
    #135
    Christina_31 said:

    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

    Hi Christina,
     
    i am also

    Hi Christina,

     

    i am also being treated in Chicago at lutheran general. As scared as I am, I have a wonderful gyno-oncologist.  If you would like her info, please let me know.  She is so positive and sincere.  I would not be where I am today without her 

  • nattyeicher
    nattyeicher Member Posts: 1
    #136
    PPC Recommended Hospitals for 2nd Opinion?

    Hi Everyone,

     

    My mother just got diagnosed today with PPC after being wrongly diagnosed with terminal kidney cancer last week by the Cleveland Clinic. This has been such a roller coaster ride of emotions. We have an appointment with a specialist on Monday at the Cleveland Clinic who will tell us what stage, treatment options, etc.

    I am very interested in a 2nd opinion since the Cleveland Clinic (while a fantastic health system) is not a top 10 cancer center. I see a few people on this forum who have went to MD Anderson? I've heard good things? Does anyone know of a great hospital that may specialize in this cancer or have some well known Doctors with experience with PPC? I haven't found much on the internet today on this. My mother lives in Ohio but we are willing to travel anywhere to get the right treatment.

    I pray for everyone looking for answers on this forum like my family, and wish everyone hope and healing.

     

    Thanks in advance for any opinions or help!

  • wholfmeister
    wholfmeister Member Posts: 315
    #137
    Ohio Health

    I'm so sorry your family has entered into this world.

    I would highly recommend you contact Dr. Gary Reid, at the Bing Cancer Center at Ohio Health Riverside Methodist Hospital in Columbus.  The cancer center is affiliated with MD Anderson, with lots of professional sharing going on.

    I have ovarian cancer, but I know Dr. Reid sees primary peritoneals.  He is wonderful, no nonsense, totally honest and so caring.  His office staff is the best.  I always feel like I am their only concern.

    Please look it up on-line and make an appointment!

    And in the future, when you post, don't attached to such old trains.  Go ahead and start a new "topic." 

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    #138
    wholfmeister said:

    Ohio Health

    I'm so sorry your family has entered into this world.

    I would highly recommend you contact Dr. Gary Reid, at the Bing Cancer Center at Ohio Health Riverside Methodist Hospital in Columbus.  The cancer center is affiliated with MD Anderson, with lots of professional sharing going on.

    I have ovarian cancer, but I know Dr. Reid sees primary peritoneals.  He is wonderful, no nonsense, totally honest and so caring.  His office staff is the best.  I always feel like I am their only concern.

    Please look it up on-line and make an appointment!

    And in the future, when you post, don't attached to such old trains.  Go ahead and start a new "topic." 

    This is off topic

    But you just made me nostalgic.  I did my nurse training at RMC back in the 60's when it was a brand new building.  Hope it's still a good place.  I know it's grown and grown.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #139
    nattyeicher said:

    PPC Recommended Hospitals for 2nd Opinion?

    Hi Everyone,

     

    My mother just got diagnosed today with PPC after being wrongly diagnosed with terminal kidney cancer last week by the Cleveland Clinic. This has been such a roller coaster ride of emotions. We have an appointment with a specialist on Monday at the Cleveland Clinic who will tell us what stage, treatment options, etc.

    I am very interested in a 2nd opinion since the Cleveland Clinic (while a fantastic health system) is not a top 10 cancer center. I see a few people on this forum who have went to MD Anderson? I've heard good things? Does anyone know of a great hospital that may specialize in this cancer or have some well known Doctors with experience with PPC? I haven't found much on the internet today on this. My mother lives in Ohio but we are willing to travel anywhere to get the right treatment.

    I pray for everyone looking for answers on this forum like my family, and wish everyone hope and healing.

     

    Thanks in advance for any opinions or help!

    Sorry to hear this.   I am

    Sorry to hear this.   I am from Pennsylvania and I go to Cleveland Clinic.   It really saved my life from the doctor where I live.  However, I did have a kidney issue and the doctor I had at Cleveland  Clinic basically said since I didn't have any symptoms  didn't need a stent.   Well 3 months later my kidney was already experienced some loss.  I do now have a stent.   Further, my gyne/onc at Cleveland was a gem.  He unfortunately moved to Texas and I had to find another doctor.  The first one I had for two appointments but changed.   This new one is great.   I am also going to be seeing a new kidney doctor up there soon too.  I told my gyne/onc that I didn't want that first urologist that I had.   I am hoping this second one is better.

    I found out if that if it doesn't feel right, move on to the next doctor.   Your intuition is probably right.   If I didn't find this new gyne/onc, I would probably fly to Texas to see my old doctor!

    My best to you and your mom,

    Kathy

    PS  I went to Cleveland Clinic for a recurrence of Stage 3a, Grade 2 endometrial adenocarcinoma after my local doctor told me I had a recurrence and it couldn't be operated on.

  • cheryl.p
    cheryl.p Member Posts: 1
    #140
    MissBee said:

    Primary Peritoneal Carcinoma
    Hi Chicagocx

    I also have PPC an i am participating in the same trial. I was dx in Dec 2008 and had optimal debulking surgery.I recieved Taxol and Carboplatin + avastin/placebo for 6 cycles. I an currently on avastin/placebo until next year. I hope you want become discourgaged. Ca-125 can rise for lots of reasons. This combo has worked well for me so far. My last CA-125 was 3. We just have to keep the Faith and hope for new drugs and treatments. Avastin has gotten good results so far. You are very young to go thru this. I will keep you in my prayers.


    May God Bless You,


    Bettye

    avastin

    when you say you are on avastin/placebo for a year is that as maintenance?  i am also a ppc patient and am nearing the end of chemo and i am scared to just stop.

     

  • bleusunn
    bleusunn Member Posts: 6
    #141
    seatown said:

    We need to update the PPC forum!

    Hello, Bleusunn--

    So sorry to hear of your diagnosis. I too was diagnosed with primary peritoneal cancer, in my case Stage IV about 26 months ago.

    Let's do a favor to ourselves & all the others suffering from this rare cancer & try to keep the peritoneal cancer forum more up-to-date. I admit, I've haven't been posting there lately. As was pointed out, this thread is very old. In fact, reading back thru it, I grew sad seeing posts from Tina Brown (no, not that Tina Brown). Tina was the one who got the peritoneal cancer forum going, keeping us PPC patients from having to be lumped into "other cancers." 

    I'm going over to the peritoneal cancer forum to post right now. In the meantime, my last 2+ years are described at

    http://www.CaringBridge.org/visit/CaroleSeaton

    All best wishes!

     

    How are you? I am still looking for help with my PPC.

    Hello Carole, I apologize if I did not acknowledge what you wrote on Nov. 1, 2014.  Thank you, and I remembered your picture as soon as I saw it again!  I have been searching and learning about my PPC but just not getting answers that seem reasonable.  As you said, we are lumped into the ovarian cancer information, which is really wrong.  In fact there are only about 400 PPC cases or less diagnosed in the United States every year.  Our condition has a problem with being misdiagnosed.  I am feeling that now, I need more information about what is going on with me.  My CT scans have not changed since July of 2014.  I know this cancer is not an aggressive one, but it can cause issues when involving an organ.  Mine is in the lining of my abdomen, and I have some small areas of cancer scattered around with some carcinoid tumors as well.  These are slow growing tumors, but can be an issue if attached to organs or blocking the intestines.  After I read over the messages again I had not realized how there are no two people alike with the cancer we have.

    I have been eating well, not in any pain other than sometimes feeling beat up over this health problem, I do quite well generally.  I have bouts of low energy now and then, but I just relax and do things where I don't need to exert myself. I can sleep like a baby, but I wonder if that is because I have depression now and then.  I have a lot of anxiety and I am trying to find a counselor that works with cancer patients.

    I wish there were more recent comments on this forum.  I guess that is the problem being such a rare disease.  My recent search has been based on new information about how the medical centers are treating cancer with individualized treatments using immunotherapy.  I have been looking out of my state of residence because I don't fit the surgery, chemo, radiation cancer patient that are most common in Kentucky.  My blood won't tolerate chemotherapy, and they can't remove my abdomen.  I did not like the cancer center here, it just did not go well.  Honestly I am in limbo right now, I just can't seem to get enough information from sources.  I have considered going to  be tested again possibly at MD Anderson or Sloan Kettering where they are more up to date with new treatments for cancer.  I have thought about going to Cleveland Clinic, which is near the area I recently moved from.

    Please let me know how you are and any comments are appreciated.

    Thank you, Christine

    bleusunn

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