Primary Peritoneal Carcinoma

kushie

Hello. Is anyone out there a survivor of Primary Peritoneal Carcinoma? I wonder what your follow up schedule is? I've moved since my surgery (Sept 05) and chemo, & am missing the good care my old doctors gave me. I'm feeling isolated,and unsure what I should be doing. If you've got advice or suggestions, I'd appreciate hearing from you! Thanks ~ Kushie ~

donnalark

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

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

Write back when you get a chance.

Karen1418

Primary Peritoneal Cancer
Hi kushie,

This is my first posting, but I felt I had to when I read your post. I was diagnosed with primary peritoneal cancer in July of 2007. I had a hysterectommy and debulking surgery, followed by 8 rounds of chemo. I finished my chemo in January and was declared in remission when I had a CT scan two months later. I see my gyn-onc every three months. I was told that IF it comes back, it will be treated like a chronic disease. I hope you have found medical help you are comfortable with.

Best wishes.

djwaz184

Wow
Rare is our cancer. I was diagnosed in June 2008 with Primary Peritoneal Psommacarcinoma. I underwent 6 treatments with taxol/carbo and had another surgery in December 2008 for a 2nd look and removal of a lot of scar tissue from the 1st surgery. As of January 15, 2009 I have been given REMISSION status!!! Yippee!

I go for check-ups with my oncologist every 3 months with a CA-125 test done as well. The CA-125 is NOT a good indicator for me however. Prior to surgery in June 2008, my CA-125 level was at 34, it is currently a 3. I will undergo CT scans every 6 months.

Although I feel as if more should be done for monitoring, but I am not sure what should be done either.

Have you found a new doctor yet? Where are you located?

Waz

dustygal1030

djwaz184 said:

Wow
Rare is our cancer. I was diagnosed in June 2008 with Primary Peritoneal Psommacarcinoma. I underwent 6 treatments with taxol/carbo and had another surgery in December 2008 for a 2nd look and removal of a lot of scar tissue from the 1st surgery. As of January 15, 2009 I have been given REMISSION status!!! Yippee!

I go for check-ups with my oncologist every 3 months with a CA-125 test done as well. The CA-125 is NOT a good indicator for me however. Prior to surgery in June 2008, my CA-125 level was at 34, it is currently a 3. I will undergo CT scans every 6 months.

Although I feel as if more should be done for monitoring, but I am not sure what should be done either.

Have you found a new doctor yet? Where are you located?

Waz

3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

VERINHOPE

dustygal1030 said:

3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

dustygal what an inspiration
dustygal what an inspiration your remission. What Stage and Grade is your Primary Peritoneal Carcenoma. I am just completing my 8th chemo treatment with my CA125 down to 17 from over 2400 pre-surgery. My oncologist says this 8th treatment will be my last with followups of CTscan. Have you ever had a PET scan, if so did you find this of value oer a CT.

VERINHOPE

djwaz184 said:

Wow
Rare is our cancer. I was diagnosed in June 2008 with Primary Peritoneal Psommacarcinoma. I underwent 6 treatments with taxol/carbo and had another surgery in December 2008 for a 2nd look and removal of a lot of scar tissue from the 1st surgery. As of January 15, 2009 I have been given REMISSION status!!! Yippee!

I go for check-ups with my oncologist every 3 months with a CA-125 test done as well. The CA-125 is NOT a good indicator for me however. Prior to surgery in June 2008, my CA-125 level was at 34, it is currently a 3. I will undergo CT scans every 6 months.

Although I feel as if more should be done for monitoring, but I am not sure what should be done either.

Have you found a new doctor yet? Where are you located?

Waz

Scar Tissue
Hi djwaz184. I agree with you for monitoring. I am just completing my 8th and last chemo treatment and will proceed with montoring with CA125 and CT scans. Have you ever had a PET scan? It is a little "nerve wracking" when thinking about no chemo (as thrilled as I am) but will the monitoring be enough!!!!! Ugh!!!

I noticed you had surgery to remove scar tissue --what was the reason for this. I thought I read somewhere (can't remember where - chemo brain i suppose) the drawbacks of scar tissue in regards to cancer adhesions but I can't remember. Was this the reason for your surgery.

P.S. Nice to catch you here I think I have chatted a bit with you on "Inspire".

ConMae

dustygal1030 said:

3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

my mother
Greetings! My mother is 85 and had been diagnosed with peritoneal carcinoma with unknown primary...she had a hysterectomy over 50 years ago but they left her ovaries. She is on both carboplatin and taxol; a 3 week on/one week off protocol. She is tolerating the chemo well with minimum side effects mostly being tired and thinning of hair. She is not a candidate for the debulking procedure due to her age. Any advice on how to handle this disease? Are there other caregivers out there handling this type of cancer? Many thanks for reading my response!

galaxygirl

dustygal1030 said:

3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

Thanks for listening
Hello - I was diagnosed March 2008 with Primary Peritoneal/Ovarian Cancer after battling with doctors and various tests for over a year. Each test would come back inconclusive until I finally said enough and went in for exploratory surgery to have a hysterectomy leaving my cervix. I underwent 6 rounds of Taxol/Carboplatin and all the horrible side effects that go with it. My CA125 was never really in the high high range, never went above 255. But, we finally got it down to 8 and I was in remission, so I was told. Three (3)months later there I was in the hospital with a partial bowel obstruction and bloating. The obstruction was cleared but the bloating never went away. Again the scans and more
Dr. visits. My CA125 began to elevate. Remember, my CA125 was never in the thousands but anything out of the normal range indicated trouble for me. February, 2009 I was put on Doxil and after 4 treatments and horrible side effects I was give a CTscan and told that the chemo is not working and that another one will have to be tried. I am scheduled for a procedure called paricentesis to releave the fluid buildup. I was told that there is no cure for this horrible disease we have and it is treated as chronic since it can come back repeatedly. I sure hope to hit a remission like you did. Thanks for listening.

ConMae

galaxygirl said:

Thanks for listening
Hello - I was diagnosed March 2008 with Primary Peritoneal/Ovarian Cancer after battling with doctors and various tests for over a year. Each test would come back inconclusive until I finally said enough and went in for exploratory surgery to have a hysterectomy leaving my cervix. I underwent 6 rounds of Taxol/Carboplatin and all the horrible side effects that go with it. My CA125 was never really in the high high range, never went above 255. But, we finally got it down to 8 and I was in remission, so I was told. Three (3)months later there I was in the hospital with a partial bowel obstruction and bloating. The obstruction was cleared but the bloating never went away. Again the scans and more
Dr. visits. My CA125 began to elevate. Remember, my CA125 was never in the thousands but anything out of the normal range indicated trouble for me. February, 2009 I was put on Doxil and after 4 treatments and horrible side effects I was give a CTscan and told that the chemo is not working and that another one will have to be tried. I am scheduled for a procedure called paricentesis to releave the fluid buildup. I was told that there is no cure for this horrible disease we have and it is treated as chronic since it can come back repeatedly. I sure hope to hit a remission like you did. Thanks for listening.

debulking procedure
My mother had the fluid build up (ascities) which lead to a laproscopic procedure to look inside of her abdomen. At this time they also did a liver biopsy to determine what was happening in her liver. The cancer in her abdomen has metastasized to her liver. She is 85 and too old for an aggressive form of chemo or the debulking procedure. There are cancer centers that are devoting more efforts to this cancer. There website is PMP Pals network...there is a list of doctors and their hospitals. I hope that this is some help to you!

sheran

ConMae said:

my mother
Greetings! My mother is 85 and had been diagnosed with peritoneal carcinoma with unknown primary...she had a hysterectomy over 50 years ago but they left her ovaries. She is on both carboplatin and taxol; a 3 week on/one week off protocol. She is tolerating the chemo well with minimum side effects mostly being tired and thinning of hair. She is not a candidate for the debulking procedure due to her age. Any advice on how to handle this disease? Are there other caregivers out there handling this type of cancer? Many thanks for reading my response!

my mother
ConMae my mother (82 yrs old) has also been diagnosed with peritoneal cancer with unknown primary and had a hysterectomy in the 70's but still has her ovaries. Her dr. calls it ovarian/peritoneal cancer since they are both treated the same way. We have seen a chemo oncologist who showed us the CT scan and the tumor is the "thickening" in the omentum/peritoneum. Her CA-125 number is 400. They have scheduled chemo of taxol/carbo for 9 weeks. She is very weak so we aren't sure how she will tolerate the chemo. She isn't a candidate for surgery due to health and heart problems. The chemo oncologist was very matter of fact telling us without chemo her time is 6 months and with chemo it is 12+ months. Her GYN Oncologist was very optomistic that the chemo would put it into remission. It's very confusing. I welcome any advice and I'm grateful that I found this website.

valdi45

sheran said:

my mother
ConMae my mother (82 yrs old) has also been diagnosed with peritoneal cancer with unknown primary and had a hysterectomy in the 70's but still has her ovaries. Her dr. calls it ovarian/peritoneal cancer since they are both treated the same way. We have seen a chemo oncologist who showed us the CT scan and the tumor is the "thickening" in the omentum/peritoneum. Her CA-125 number is 400. They have scheduled chemo of taxol/carbo for 9 weeks. She is very weak so we aren't sure how she will tolerate the chemo. She isn't a candidate for surgery due to health and heart problems. The chemo oncologist was very matter of fact telling us without chemo her time is 6 months and with chemo it is 12+ months. Her GYN Oncologist was very optomistic that the chemo would put it into remission. It's very confusing. I welcome any advice and I'm grateful that I found this website.

My Mom
Hi. My Mom has this Peritoneal cancer and is 65 yrs. old. Overall very good health. I don't know what type of chemo she is on or her numbers but I am glad to see some good news posted here. It gives me hope. She just finished her 4th chemo and has 2 more to go. They have not found a tumor. They say it is like floating cancer cells around the stomach lining. There is an area where some of them have now stuck together on her adominal wall. The chemo certainly seems to have done alot of good up to this point so I pray with 2 more it will do even more. Her Doctor is affiliated with the Anderson Inst. in Tx and she lives in FL. I am 1000 miles away which is very hard on me. I pray alot!
Any advise?

lottieruth

valdi45 said:

My Mom
Hi. My Mom has this Peritoneal cancer and is 65 yrs. old. Overall very good health. I don't know what type of chemo she is on or her numbers but I am glad to see some good news posted here. It gives me hope. She just finished her 4th chemo and has 2 more to go. They have not found a tumor. They say it is like floating cancer cells around the stomach lining. There is an area where some of them have now stuck together on her adominal wall. The chemo certainly seems to have done alot of good up to this point so I pray with 2 more it will do even more. Her Doctor is affiliated with the Anderson Inst. in Tx and she lives in FL. I am 1000 miles away which is very hard on me. I pray alot!
Any advise?

my mom
My mother also was diagnosed with Peritoneal Cancer, she was 75 when she passed away May 26th 2009. I urge you to seek out Brian Logge MD in Omaha NE. Holly is his assistant. There are no words to describe this man. My mother was diagnosed in Oct 07. We had done every coctail of chemo there was. This is a very aggressive disease and I wish we would have known about Dr Loggie sooner. He does the heat infused chemo, I believe my mother would still behere had we been ableto get to him sooner. On paper , she didnt look good, but he agreed to a consultation in March of this year, we were there on a MOnday, he did surgery on Friday. She also had a hysterectomy many yrs ago leaving her ovaries. When he opened her up, her ovaries were the size of Grapefruit and fused together, her bowel was fused into a big ball and moved under her arm. He had to call in a transplant surgeon to help him put her back together , she was on the table for over 8 hours therefore he was unable to do the heated chemo treatment. He did what he could to give her a better quality of life, however, in May, her Gtube wouldnt heal, after going into the hospital, it was determined that her "gut" had basically ceased to work. I live in Oklahoma City, I understand your concern, chemo also helped mom, taxol seemed to do the best for mom. She also had COPD, which hindered treatments. I wish you and your mother well, I know there are many who live productive lives longer with the right treatment.
God bless and I will say a prayer for you and your family.

TnTClark

lottieruth said:

my mom
My mother also was diagnosed with Peritoneal Cancer, she was 75 when she passed away May 26th 2009. I urge you to seek out Brian Logge MD in Omaha NE. Holly is his assistant. There are no words to describe this man. My mother was diagnosed in Oct 07. We had done every coctail of chemo there was. This is a very aggressive disease and I wish we would have known about Dr Loggie sooner. He does the heat infused chemo, I believe my mother would still behere had we been ableto get to him sooner. On paper , she didnt look good, but he agreed to a consultation in March of this year, we were there on a MOnday, he did surgery on Friday. She also had a hysterectomy many yrs ago leaving her ovaries. When he opened her up, her ovaries were the size of Grapefruit and fused together, her bowel was fused into a big ball and moved under her arm. He had to call in a transplant surgeon to help him put her back together , she was on the table for over 8 hours therefore he was unable to do the heated chemo treatment. He did what he could to give her a better quality of life, however, in May, her Gtube wouldnt heal, after going into the hospital, it was determined that her "gut" had basically ceased to work. I live in Oklahoma City, I understand your concern, chemo also helped mom, taxol seemed to do the best for mom. She also had COPD, which hindered treatments. I wish you and your mother well, I know there are many who live productive lives longer with the right treatment.
God bless and I will say a prayer for you and your family.

Want to help my mom
My mother has been fighting Primary Peritoneal Cancer since April 2008. She was diagnosed and when they did the first surgery they couldn't even find her uterus or ovaries. They were covered with what the doctor said a plaque like cancer. That meant they couldn't do the debulking like they wanted to. She went through chemo (6 rounds) and then had another surgery. This time they were able to remove an ovary. She then went through another round of chemo though it was a different type. The chemo seemed to stop the fluid in her abdomen and we were excited that her CA125 count was 23. After a few months she had pain in her chest and they found fluid in her pleural cavity. They drained that and she was okay for a few months. In July 2009 she once again had fluid in her pleural cavity and had it removed. This time it only lasted a week and she went to the emergency room because she felt like she couldn't breath. They admitted her and found more fluid which they removed. A week later at her Dr. appt. they did an x-ray and found more fluid. When she went to the hospital to have it drained, air bubbles started coming out also. This fluid has cancer cells in it. Is this as bad as I feel it is? She is going to talk to a surgeon on Friday to see if he thinks pleurocentesis would be helpful. I can't find much information on what to expect next or if anyone really knows. I just really need to know to prepare myself so that I can help her through this.

ChicagoRia

djwaz184 said:

Wow
Rare is our cancer. I was diagnosed in June 2008 with Primary Peritoneal Psommacarcinoma. I underwent 6 treatments with taxol/carbo and had another surgery in December 2008 for a 2nd look and removal of a lot of scar tissue from the 1st surgery. As of January 15, 2009 I have been given REMISSION status!!! Yippee!

I go for check-ups with my oncologist every 3 months with a CA-125 test done as well. The CA-125 is NOT a good indicator for me however. Prior to surgery in June 2008, my CA-125 level was at 34, it is currently a 3. I will undergo CT scans every 6 months.

Although I feel as if more should be done for monitoring, but I am not sure what should be done either.

Have you found a new doctor yet? Where are you located?

Waz

Congrats
Waz,

First, congrats on your remission!!! Your email gave me hope! I just got diagnosed with stage 3 Primary Peritoneal Carcinoma in July. I went back to work 4 weeks after my debulking surgery and I started chemo two weeks ago (Taxol/Carbo) and was wondering if you had any suggestions on how to get through the fatigue.I'm just tired all of the time. I would greatly appreciate any suggestions that you have since I will have to work as I get my chemo treatments.

Thanks a bunch!
Maria

InDeep

valdi45 said:

My Mom
Hi. My Mom has this Peritoneal cancer and is 65 yrs. old. Overall very good health. I don't know what type of chemo she is on or her numbers but I am glad to see some good news posted here. It gives me hope. She just finished her 4th chemo and has 2 more to go. They have not found a tumor. They say it is like floating cancer cells around the stomach lining. There is an area where some of them have now stuck together on her adominal wall. The chemo certainly seems to have done alot of good up to this point so I pray with 2 more it will do even more. Her Doctor is affiliated with the Anderson Inst. in Tx and she lives in FL. I am 1000 miles away which is very hard on me. I pray alot!
Any advise?

A place to stay?
Have you seen or heard about The American Cancer Society Hope Lodge? Their website describes it like this: "Each Hope Lodge offers cancer patients and their families a free, temporary place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows Hope Lodge guests to focus on the most important thing: getting well."

Their website offers locations and information on how to request a place to stay: http://www.cancer.org/docroot/subsite/hopelodge/index.asp

Of course, you have to GET there. They're building a new one next Fox Chase Cancer Center (near Philadelphia) as we speak.

Be well!

bentleys mom

ChicagoRia said:

Congrats
Waz,

First, congrats on your remission!!! Your email gave me hope! I just got diagnosed with stage 3 Primary Peritoneal Carcinoma in July. I went back to work 4 weeks after my debulking surgery and I started chemo two weeks ago (Taxol/Carbo) and was wondering if you had any suggestions on how to get through the fatigue.I'm just tired all of the time. I would greatly appreciate any suggestions that you have since I will have to work as I get my chemo treatments.

Thanks a bunch!
Maria

BE GOOD TO YOURSELF!
My nurses used to say (@ John Hopkins), to stay out of that "dark place" in your mind. Stay VERY positive,and to let people HELP me, where ever and when ever they could. Which was extremely hard for me because I had been so independent for so long. I am a 3 year survivor and have no intentions of ever getting sick again.
I also worked, when I could. And if your tired---rest!!! By being over tired you don't let your body recover like it should. Be good to yourself. It's the only life we get, so take your time and let the "unimportant things" go.(I'm still pulling weeds that grew while I was sick. Ha!) Right now --only YOU can do the right things to heal. Then you'll be happy and healthy like me !!! Sometimes I don't pat myself on the back enough, recovering from this nasty "C" word. But reading some of these boards,reminds me of what I've been through and how well I recovered. Thanks to God, my doctors,surgeons and nurses, and not to ever ever forget my Mother,my daughter and friends who supported me and prayed for me. (PS--and my Golden Retriever,who has since passed ,who stayed by me night and day.)
You fight this girl!!!!

bb88

valdi45 said:

My Mom
Hi. My Mom has this Peritoneal cancer and is 65 yrs. old. Overall very good health. I don't know what type of chemo she is on or her numbers but I am glad to see some good news posted here. It gives me hope. She just finished her 4th chemo and has 2 more to go. They have not found a tumor. They say it is like floating cancer cells around the stomach lining. There is an area where some of them have now stuck together on her adominal wall. The chemo certainly seems to have done alot of good up to this point so I pray with 2 more it will do even more. Her Doctor is affiliated with the Anderson Inst. in Tx and she lives in FL. I am 1000 miles away which is very hard on me. I pray alot!
Any advise?

similar situation
Hi, I have a similar situation. My mom is 61 and has just been diagnosed with peritoneal. They also have not found a tumor and are theorizing its peritoneal. She also lives in Florida and is being treated at the Moffit center which seems to be an amazing hospital that is just a cancer hospital. We just found out about this three weeks ago. She went to a lung doctor when she was shortness of breath only to find out she had malignant pleural effusion. That is cancer cells in fluid filling the lungs. My mother has never smoked and is in good health. I have been in a state of shock and its hard to be informed that this cancer is genetic. She also has fluid in her abdomen. I live in New York and have a job that makes it difficult for me to leave NY for a period of time. You feel helpless so far away. She is my mother and I would do anything to help which is why I joined this site. Its nice to know your not alone and people are feeling and going through the same situation. The moffit center in Tampa Florida has been very informative and caring. I dont know where in Fl you mom is but you should check them out. Keep positive is sthe best advise I can give you and let your mom know you love her and are fighting for her, we are miles away but only a second to call and say I love you.....
Best...

Unknown

This comment has been removed by the Moderator

overin6

dustygal1030 said:

3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

Definitely an inspiration!
I was just diagnosed in August of this year and am 7 weeks post surgery and about to have my second chemo treament this week. Like so many of you, I was shocked to get this diagnosis as I had my ovaries removed 4 years ago after my second bout with breast cancer and learning I am BRCA1 positive. No one ever discussed this risk and that I should continue to have CA125 tests run each year. My CA 125 prior to surgery was 3600! It was down to 119 after surgery .
Hearing survivor stories makes me feel so much better - thank you for posting your stories.

My chemo consists of 2 IV taxol/cisplatin and then 4 combo IV/cis and IP carbo - is that the same protocol you had? Any advice on how to get thru it - I understand it leaves you very fatigued.

coder59

TnTClark said:

Want to help my mom
My mother has been fighting Primary Peritoneal Cancer since April 2008. She was diagnosed and when they did the first surgery they couldn't even find her uterus or ovaries. They were covered with what the doctor said a plaque like cancer. That meant they couldn't do the debulking like they wanted to. She went through chemo (6 rounds) and then had another surgery. This time they were able to remove an ovary. She then went through another round of chemo though it was a different type. The chemo seemed to stop the fluid in her abdomen and we were excited that her CA125 count was 23. After a few months she had pain in her chest and they found fluid in her pleural cavity. They drained that and she was okay for a few months. In July 2009 she once again had fluid in her pleural cavity and had it removed. This time it only lasted a week and she went to the emergency room because she felt like she couldn't breath. They admitted her and found more fluid which they removed. A week later at her Dr. appt. they did an x-ray and found more fluid. When she went to the hospital to have it drained, air bubbles started coming out also. This fluid has cancer cells in it. Is this as bad as I feel it is? She is going to talk to a surgeon on Friday to see if he thinks pleurocentesis would be helpful. I can't find much information on what to expect next or if anyone really knows. I just really need to know to prepare myself so that I can help her through this.

Help for fluid buid up
Dear TnTClark- My mom was dx with stage 4 metastatic breast cancer 3 years ago this December. Even though it had been 24 years since her last recurrence of breast cancer, she was now being told that the cancer had metastized as peritoneal cancer. Like your mother, she was also having problems with significant fluid build-up around the abdomen and into her back requiring continuous trips to the ER. In January 2009 at the Cancer of America in Philly, she had surgery for placement of a Pleurx catheter. This has made her life so much easier. We now can take the fluid off of her at home and we do so every couple of days. She is able to do this herself but prefers someone to help with this. It is extremeley easy to hook this up and takes less than 5 minutes to perform. Since mom's fluid continues to build up daily, this has been a life saver for her not having to go to the hospital every couple of days. And since the tubing is placed under her skin, there is no need to continually puncture her stomach with painful needles. Hope this information helps your mom.