PRIMARY PERITONEAL CANCER
I am 33 years old and was recently diagnosed with stage 4 primary peritoneal cancer. I am looking for others who are in the same boat. I am BRCA1+. I do not mind talking to women who have or had ovarian cancer, however, there is a difference between the 2. It is discouraging to come on this website and not even see a drop down box with Primary Peritoneal on it. It's rare, it's treated like ovarian, but it would still be nice to raise awareness.
I did EVERYTHING right - I get tested with the CA125 blood draw every 6 months along with a transvaginal ultrasound & pelvic ultrasound. The only thing that picked it up was an elevated CA125.
Hope to hear from some of you soon. I am in a study and I'm on cisplatin and taxol.
take care,
chicagocx
Comments
-
Hello
Hello Chicago,
My name is Lisa and I am brand new, so I certainly don't know very much. My mother was diagnosed last week with what they believe is 90% ovarian cancer. If not, she has peritoneal cancer. What I have learned in only the past week is it is very scary, but there are treatments that are promising for getting these horrible diseases to remiss. I also know that there are many many caring women on this site who will be so supportive. I couldn't have gotten through this week without them. For sure, get an oncologist you trust. If you don't have one, the Mayo Clinic in rochester, MN is fabulous. Anyway, I will say prayers for you tonight and I know there will be people who post as well who know so much about this.
As far as doing everything right, so did my mother. Unfortunately these cancers are "silent" and extremely hard to detect early. Often, they are linked genetically, so there isn't much you can do. It is NOT your fault. I am glad you are in a study and getting treatment. I am also sorry about your diagnosis. But there are wonderful women here who will be supportive. I have checked in 3 times a day every day this week and it really helps. I hope it helps for you.
Sincerely, Lisa Newbie0 -
Primary Peritoneal Cancer
Good to meet you, Chicagocx.
My "ovarian" cancer is actually primary peritoneal cancer also. But, all of my charts, the lab, the doctors and nurses, all refer to it as ovarian. I had five fist-sized tumors, and was staged 111C. That was just over five years ago. I've done many different chemo drugs, and was in a trial a couple of years ago with Doxil. That was probably the most difficult one for me. I am now on Cisplatin and Gemzar. My cancer was found via a pap smear, which I understand rarely shows up my type of cancer (so in that sense, I was very lucky). Apparently my insurance will not cover the BRCA1 test, so I don't know if I have the gene or not, but I would really like to know.
You are very young, and it seems like they are coming through with more and more chemotherapys in the last year, so hopefully that can aid in finding out more about this horrific disease.
There may be more ladies on this site such as myself that have the same cancer as you and me, but refer to it as ovarian, as I always have. So, stay on the site, and hopefully you will meet others.
This is a wonderful forum and I think you will benefit greatly from it. I'm sure I can speak for everyone and tell you that we are all hoping and praying for you! Luv and hugs, MM0 -
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,
Christina0 -
Primary Peritoneal CarcinomaChristina_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 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,
Bettye0 -
Hi Chicagocx,
My name is
Hi Chicagocx,
My name is Maria, I'm 42 yrs old and just got diagnosed a few weeks ago with stage 3 peritoneal carcinoma (my doc didn't mention if I'm b or c so we'll have to check the pathology reports for that). I'm home recovering from the debulking surgery where they removed 80% of the cancer along with a lot of my large and small intestines and am scheduled for chemotherapy (Taxol + Carboplatin) this Thursday. I feel just as frustrated as you that everyone just lumps us in with ovarian cancer. That doesn't help when your looking for info, resources, support groups, etc.
Unfortunately, this is my second cancer. I had Hodgkins stage 4 when I was 23 yrs old and remember how awful that chemo treatment was. I'm still in remission and celebrated my 18th anniversary this year!
If you don't mind me asking, how is your recovery from chemo treatments? My oncologist tells me I should only be sick for about a day and I find that so hard to believe with my past experience. I would love to think that this time around I can still go to work and have some kind of quality of life.
Anything that you would like to share would be greatly appreciated.
Sending my good thoughts to you,
Maria0 -
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.0 -
111CMichaelaMarie said:Primary Peritoneal Cancer
Good to meet you, Chicagocx.
My "ovarian" cancer is actually primary peritoneal cancer also. But, all of my charts, the lab, the doctors and nurses, all refer to it as ovarian. I had five fist-sized tumors, and was staged 111C. That was just over five years ago. I've done many different chemo drugs, and was in a trial a couple of years ago with Doxil. That was probably the most difficult one for me. I am now on Cisplatin and Gemzar. My cancer was found via a pap smear, which I understand rarely shows up my type of cancer (so in that sense, I was very lucky). Apparently my insurance will not cover the BRCA1 test, so I don't know if I have the gene or not, but I would really like to know.
You are very young, and it seems like they are coming through with more and more chemotherapys in the last year, so hopefully that can aid in finding out more about this horrific disease.
There may be more ladies on this site such as myself that have the same cancer as you and me, but refer to it as ovarian, as I always have. So, stay on the site, and hopefully you will meet others.
This is a wonderful forum and I think you will benefit greatly from it. I'm sure I can speak for everyone and tell you that we are all hoping and praying for you! Luv and hugs, MM
What is 111C? My mom has been battling this cancer since December of 2008. She went through extensive chemo for 6 months and is now taking an experimental drug A6. She receives a shot everyday. She was stage 3 in her initial diagnosis. So I am unfamiliar with 111C. I would love to know if anyone has undergone any radical diet changes. My mom is currently researching a macrobiotic cancer diet. Has anyone out there tried that and what were the results.
Thanks so much,
MB0 -
PPCbigragu714 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.
Hi everyone! I am also new here. My cancer was discovered during gall bladder surgery. They call it ovarian cancer, but all my "stuff" was removed over 25 years ago. It was explained to me like this: When you are forming in the womb, the peritoneal and ovarian tissues are the same. So the cancers are treated the same and regularly referred to as ovarian cancer. Seems insurance companies will more readily accept ovarian cancer over peritoneal cancer. Just terms, same cancer. I am stage 3C and currently have a small, slow growing tumor in the peritoneal area. I have been through debulking surgery and have been fighting this for 4 years (I am 58 now). I am also Type 1 diabetic. So the chemo's and steroids usually will push my sugar numbers into the upper 500's. But they get back to normalish within a couple of days. I am not on any special diet except for the diabetes.
You are doing the right thing in keeping your mom's attitude positive and happy. That, I know is a big job, but you are doing it! Hurrah! I have learned to wean all of the negative people out of my life and just surround myself with positive and caring people. It's my life and I choose to do this, for my own mental and physical health. Keep on helping your mom to be happy and positive. This will extend her life more than you know!
Part of HIS plan,
Terri0 -
Just been diagnosed - help!Bambibino said:PPC
Hi everyone! I am also new here. My cancer was discovered during gall bladder surgery. They call it ovarian cancer, but all my "stuff" was removed over 25 years ago. It was explained to me like this: When you are forming in the womb, the peritoneal and ovarian tissues are the same. So the cancers are treated the same and regularly referred to as ovarian cancer. Seems insurance companies will more readily accept ovarian cancer over peritoneal cancer. Just terms, same cancer. I am stage 3C and currently have a small, slow growing tumor in the peritoneal area. I have been through debulking surgery and have been fighting this for 4 years (I am 58 now). I am also Type 1 diabetic. So the chemo's and steroids usually will push my sugar numbers into the upper 500's. But they get back to normalish within a couple of days. I am not on any special diet except for the diabetes.
You are doing the right thing in keeping your mom's attitude positive and happy. That, I know is a big job, but you are doing it! Hurrah! I have learned to wean all of the negative people out of my life and just surround myself with positive and caring people. It's my life and I choose to do this, for my own mental and physical health. Keep on helping your mom to be happy and positive. This will extend her life more than you know!
Part of HIS plan,
Terri
I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.
I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.
I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.
I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.
Tina0 -
Start a new topicTina Brown said:Just been diagnosed - help!
I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.
I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.
I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.
I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.
Tina
The orgin of this is kind of old.l I suggest you start a new topic so we can respond just to you. From the Ovarian Discussion page you will find "Start a new topic" on the left hand side just before the list of topics.
You will get more response. I have never had a fluid problem but there are lots of ladies on this site that have. Mine is ovarian, but there are several "PPC's". And, YES, we all have experienced the feeling that something has taken over our lives and bodies. Schedules change, outlooks change, bodies change. You feel betrayed because you did everything right by regular check-ups, exercise, diet and WHAMMO this hits you between the eyes. Tina, two things got me through the first two months: a deep believe in God and I started a journal. The journal will help later when you are having trouble remembering these early test and what was said. You should also get copies of all the test that are done to refer back to. Take it one day at a time and know we are here for support whenever you want to post a worry or question. (((HUGS)))
Saundra0 -
It's 2010, and the reality has hitTina Brown said:Just been diagnosed - help!
I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.
I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.
I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.
I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.
Tina
I've been reading this blog for months, and I finally have the courage to join.
I was diagnosed in April 2009 with PPC. I had a hysterectomy 8 years ago at the age of 43 due to chronic pain during menstruation and enlarged fibroids.
I woke up one morning with a slight stain and made a gyn appt for the next day. The Dr said everything looked good, she couldn't find a source of staining and did a pap smear. The pap came back questionable, and the DR performed a colposcopic biopsy. She found a tiny pea size cauliflower lesion in the folds of my cervix, sent it off for evaluation, and the news came back 10 days later. The "C" had spread. I was diagnosed with Stage 3 PPC. I had a complicated debulking surgery a week later. I spent 2 weeks in the hospital and began chemo 2 weeks later. My last treatment was September 16th, my daughter's birthday. I'm not complaining about the surgery, or the chemo, or any of it. I still cannot bring myself to admit I have this. I felt fine before this and I feel physically fine now. I have a 3 month check up Feb 9, I'm praying everything will be ok. I've been in the ER twice with panic attacks, once for an asthma attack and the other for stomach pain, they did cat scans and everything was negative.
I find it hard not to think about the what ifs, but going to work and being busy helps
I find the most peace in being with family and doing the things I love, I hope that you all can do the same.
Blessings to all, Caryn0 -
Hi CarynCH1836 said:It's 2010, and the reality has hit
I've been reading this blog for months, and I finally have the courage to join.
I was diagnosed in April 2009 with PPC. I had a hysterectomy 8 years ago at the age of 43 due to chronic pain during menstruation and enlarged fibroids.
I woke up one morning with a slight stain and made a gyn appt for the next day. The Dr said everything looked good, she couldn't find a source of staining and did a pap smear. The pap came back questionable, and the DR performed a colposcopic biopsy. She found a tiny pea size cauliflower lesion in the folds of my cervix, sent it off for evaluation, and the news came back 10 days later. The "C" had spread. I was diagnosed with Stage 3 PPC. I had a complicated debulking surgery a week later. I spent 2 weeks in the hospital and began chemo 2 weeks later. My last treatment was September 16th, my daughter's birthday. I'm not complaining about the surgery, or the chemo, or any of it. I still cannot bring myself to admit I have this. I felt fine before this and I feel physically fine now. I have a 3 month check up Feb 9, I'm praying everything will be ok. I've been in the ER twice with panic attacks, once for an asthma attack and the other for stomach pain, they did cat scans and everything was negative.
I find it hard not to think about the what ifs, but going to work and being busy helps
I find the most peace in being with family and doing the things I love, I hope that you all can do the same.
Blessings to all, Caryn
You have done so well and have come through so much you are a very brave lady. I am just about to have my third round of chemo this Friday and it still doesn't seem real to me that I have this life threatening illness because I actually feel so well. I don't have any pain or discomfort since I have had the chest drains. I think that I may be in denial, but maybe my brain is protecting me by not allowing me to think about the future.
Its true what everyone says about PPC being classed as Ovarian. When I was having my first chemo the chemo nurse asked me how long had I known I'd had ovarian cancer. I soon put her straight!!!
It is hard to get your head around the fact that this cancer is not curable. Why isn't it? Surely if they removed all of the cells as in other cancers, why do they grow back? However another part of me thinks the technology and advances with medicine today and people can live for years and years with cancer so long as they can tolerate the treatment.
Lets just "keep on going" and never give up - you never know whats round the corner.
Good luck Tina xxxxx0 -
scaryCH1836 said:It's 2010, and the reality has hit
I've been reading this blog for months, and I finally have the courage to join.
I was diagnosed in April 2009 with PPC. I had a hysterectomy 8 years ago at the age of 43 due to chronic pain during menstruation and enlarged fibroids.
I woke up one morning with a slight stain and made a gyn appt for the next day. The Dr said everything looked good, she couldn't find a source of staining and did a pap smear. The pap came back questionable, and the DR performed a colposcopic biopsy. She found a tiny pea size cauliflower lesion in the folds of my cervix, sent it off for evaluation, and the news came back 10 days later. The "C" had spread. I was diagnosed with Stage 3 PPC. I had a complicated debulking surgery a week later. I spent 2 weeks in the hospital and began chemo 2 weeks later. My last treatment was September 16th, my daughter's birthday. I'm not complaining about the surgery, or the chemo, or any of it. I still cannot bring myself to admit I have this. I felt fine before this and I feel physically fine now. I have a 3 month check up Feb 9, I'm praying everything will be ok. I've been in the ER twice with panic attacks, once for an asthma attack and the other for stomach pain, they did cat scans and everything was negative.
I find it hard not to think about the what ifs, but going to work and being busy helps
I find the most peace in being with family and doing the things I love, I hope that you all can do the same.
Blessings to all, Caryn
Caryn,
Sorry to hear of your diagnosis. Once I started feeling better I too thought this all must be a big mistake. I don't think I joined until I completed my treatment too. I found this board way to scary....I still do. But I also find hope, understanding, support and stories of survival. I think most of us on here have issues with anxiety and fear of reoccurence. I too suffer from ongoing bowel issues and have been to the ER myself so I do understand!!
I have two young kids so I don't have time to sit around feeling sorry for myself. I too find so much to do all day I don't know how I worked full time before. It was absolute HEAVEN to be home with my kids all summer. I stopped working when I was diagnosed.
I wish you a lengthy remission!!!0 -
Intro
First, I wanted to thank you all for sharing your stories. I don't understand how this type of cancer is so unknown...there's not even a topic for it on these boards.
http://www.caringbridge.org/visit/sinnes
My mother was diagnosed in October of 2007. I've included a link to her caring bridge site above, in which she's journaled about her treatments.
I live a few hours away, have a full time job and two children so I can't be there as often as I'd like but I did go up last week after she was admitted into the ICU. She's been having fluid accumuliation around the lungs for a few months and had undergone a few thoracentisis (thoracentisi?) procedures. She finally was so frusterated by the breathing issues that she elected to have pluradisis done...All I have to say is that when I arrived last Tuesday, I didn't expect she would live until Wednesday. It was terrifying to be quite honest. She pulled through and will (hopefully) be released from the hospital soon thank goodness.
Anyway, I just wanted to share her story and I hope to be able to report on a full recovery and at least a few more pain free months with my mom. -Cary0 -
Plueradesiscdwright said:Intro
First, I wanted to thank you all for sharing your stories. I don't understand how this type of cancer is so unknown...there's not even a topic for it on these boards.
http://www.caringbridge.org/visit/sinnes
My mother was diagnosed in October of 2007. I've included a link to her caring bridge site above, in which she's journaled about her treatments.
I live a few hours away, have a full time job and two children so I can't be there as often as I'd like but I did go up last week after she was admitted into the ICU. She's been having fluid accumuliation around the lungs for a few months and had undergone a few thoracentisis (thoracentisi?) procedures. She finally was so frusterated by the breathing issues that she elected to have pluradisis done...All I have to say is that when I arrived last Tuesday, I didn't expect she would live until Wednesday. It was terrifying to be quite honest. She pulled through and will (hopefully) be released from the hospital soon thank goodness.
Anyway, I just wanted to share her story and I hope to be able to report on a full recovery and at least a few more pain free months with my mom. -Cary
Hi Cary
Just been reading your message about your mum. I too have had this procedure done as well as 3 previous chest drains. It is quite un common so it is nice to find someone else who had fluid around the lungs. I am on chemo and have been told that the chemo will prevent the cancer cells accumulating in the pluera so will stop the fluid build up. The first time it happened to me I was really scared because I could not breath unless I was sitting still and up right. It is amazing how much better you feel once the fluid has been drained off.
I will look at your mom's story via the web site you have posted. Take care Tina xx0 -
Caryn,CH1836 said:It's 2010, and the reality has hit
I've been reading this blog for months, and I finally have the courage to join.
I was diagnosed in April 2009 with PPC. I had a hysterectomy 8 years ago at the age of 43 due to chronic pain during menstruation and enlarged fibroids.
I woke up one morning with a slight stain and made a gyn appt for the next day. The Dr said everything looked good, she couldn't find a source of staining and did a pap smear. The pap came back questionable, and the DR performed a colposcopic biopsy. She found a tiny pea size cauliflower lesion in the folds of my cervix, sent it off for evaluation, and the news came back 10 days later. The "C" had spread. I was diagnosed with Stage 3 PPC. I had a complicated debulking surgery a week later. I spent 2 weeks in the hospital and began chemo 2 weeks later. My last treatment was September 16th, my daughter's birthday. I'm not complaining about the surgery, or the chemo, or any of it. I still cannot bring myself to admit I have this. I felt fine before this and I feel physically fine now. I have a 3 month check up Feb 9, I'm praying everything will be ok. I've been in the ER twice with panic attacks, once for an asthma attack and the other for stomach pain, they did cat scans and everything was negative.
I find it hard not to think about the what ifs, but going to work and being busy helps
I find the most peace in being with family and doing the things I love, I hope that you all can do the same.
Blessings to all, Caryn
My mom is 63 and was diagnosed with stage 4 PPC last April 2009, as you were. She had successful debulking surgery and 8 rounds of chemo. She just went for her 3 month follow up after chemo. Cat Scan is today. Her CA125 has climbed to 73 from 30 at the end of chemo. She also feels good. The emotional aspect and anxiety are the most difficult at this time, I think. She will find out what treatment they will proceed with in a week and a half - either some sort of pills or a different chemo, depending on the results of the cat scan.
The best of luck to you at your appointment next week.
Have you had replies from anyone else? We are in the Chicago area. Do you mind saying where you are from?
Eileen0 -
just diagnosed...Tina Brown said:Just been diagnosed - help!
I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.
I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.
I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.
I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.
Tina
Dear Tina,
My mom was first diagnosed with fluid around her lungs, too. If you see the post below to Caryn, you can see where she is at. How are you doing? Have you changed your diet at all? Are you able to exercise since you said your hobby is running? My mom has really researched an anti cancer diet and walks daily on her treadmill. She started learning about meditation at a local cancer support center.
I hope today finds you and all on this board well.
Eileen0 -
chemoTina Brown said:Hi Caryn
You have done so well and have come through so much you are a very brave lady. I am just about to have my third round of chemo this Friday and it still doesn't seem real to me that I have this life threatening illness because I actually feel so well. I don't have any pain or discomfort since I have had the chest drains. I think that I may be in denial, but maybe my brain is protecting me by not allowing me to think about the future.
Its true what everyone says about PPC being classed as Ovarian. When I was having my first chemo the chemo nurse asked me how long had I known I'd had ovarian cancer. I soon put her straight!!!
It is hard to get your head around the fact that this cancer is not curable. Why isn't it? Surely if they removed all of the cells as in other cancers, why do they grow back? However another part of me thinks the technology and advances with medicine today and people can live for years and years with cancer so long as they can tolerate the treatment.
Lets just "keep on going" and never give up - you never know whats round the corner.
Good luck Tina xxxxx
Tina,
I am also curious to know what chemo and any other cancer meds they are using.
Eileen0 -
Stage IV PPCeward said:Caryn,
My mom is 63 and was diagnosed with stage 4 PPC last April 2009, as you were. She had successful debulking surgery and 8 rounds of chemo. She just went for her 3 month follow up after chemo. Cat Scan is today. Her CA125 has climbed to 73 from 30 at the end of chemo. She also feels good. The emotional aspect and anxiety are the most difficult at this time, I think. She will find out what treatment they will proceed with in a week and a half - either some sort of pills or a different chemo, depending on the results of the cat scan.
The best of luck to you at your appointment next week.
Have you had replies from anyone else? We are in the Chicago area. Do you mind saying where you are from?
Eileen
I have recently been diagnosed with Stage IV Primary Serous Papillary Peritoneal Cancer and am scared out of my mind.
I felt fine until late December, 2009 when I went to the doctor for treatment for a urinary tract infection. I told him at the time that my stomach really hurt also and he informed me that something else was probably going on there. I got rid of the urinary tract infection but not the pain. My doctor ordered a CT scan of my stomach in mid-January, 2010 and I could have dropped dead in his office when he gave me the results. The report showed that I had cancer in my peritoneum, there were tiny spots on my liver, lungs, and heart, and some spots on my lymph nodes.
Since then, I have been to a medical oncologist, have had a colonoscopy done (all was well there), an endoscopy done (all was well there), and last Friday, February 12th, 2010, I had an MRI of my chest and liver area and an ultravaginal ultrasound. I don't have the results of either of those tests yet but fear for the worst.
I also presented with ascites (fluid in my abdomen that made me look 8 months pregnant). This was determined by the medical oncologist on my initial visit with him. Thereafter, a procedure was performed where they drew off 6 litres of fluid. I lost 12 pounds. They sent samples in for staining in order to see where the cancer originated. They say it's the ovaries but it actually began in the peritoneum. I now am filling up with fluid again.
I was encouraged by my medical oncologist to get a second opinion and am doing so this coming Tuesday. I will be consulting with a gynocologist/oncologist who is reputed to be excellent in this field.
The fear of the unknown has me in its grip! One minute I think I'm going to fight this awful disease with all my might and the next minute I think I'll just have them keep me comfortable with pain meds and save everyone around me a lot of grief.
I spent 8 years taking care of my husband who had colon cancer that eventually metasticized to his liver and then to his bile ducts. We buried him in August, 2008. At the same time, I have been running our business and helping take care of our 93 year old father. I will be 65 years old in April of this year. I do want to live and see my wonderful son graduate from college this May but I am soooo scared!
I will continue to update here as I receive the medical information.
Lyla0
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