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Primary Peritoneal Carcinoma

kushie
Posts: 1
Joined: Aug 2008

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
Posts: 1
Joined: Aug 2008

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.

shane h
Posts: 1
Joined: Oct 2010

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

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

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

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

Hope your mum soon feels a bit better

Tina xx

ForBenandSophia
Posts: 10
Joined: Nov 2010

Hi Tina,

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

Thank you for listening,
Erin

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

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

Tina xx

Shari Berry
Posts: 1
Joined: Dec 2012

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

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

You'll get lots more information there. This thread has been quiet for a couple of years.

AngelElayne
Posts: 1
Joined: Dec 2012

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

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

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

Thank you, God Bless

Karen1418
Posts: 48
Joined: Feb 2008

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's picture
djwaz184
Posts: 1
Joined: Feb 2009

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
Posts: 3
Joined: Apr 2009

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
Posts: 2
Joined: Apr 2009

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.

ConMae
Posts: 2
Joined: May 2009

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!

sheran
Posts: 1
Joined: Jun 2009

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
Posts: 4
Joined: Jun 2009

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
Posts: 1
Joined: Jul 2009

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
Posts: 2
Joined: Aug 2009

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.

coder59
Posts: 1
Joined: Oct 2009

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.

AyJay
Posts: 1
Joined: Apr 2010

I had never heard of Cancer Treatment Centers of America until your posting, and I am so grateful. I just found out there is one in Philly which is only an hour away! What a marvelous place...filled with so much hope for body, mind and spirit. And nutrition counseling is a part of the treatment. I had some questions, so chatted with a rep online and she was wonderful..she answered all my questions and concerns, and even checked to see if my insurance would be accepted. THANK YOU coder59 for mentioning the CTCA. {{{}}}}}} <-- e-hugs

InDeep
Posts: 1
Joined: Sep 2009

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!

bb88
Posts: 1
Joined: Oct 2009

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...

Milsdaughter
Posts: 1
Joined: Jan 2010

Our moms are very close in age...mine is 63 but you would think she was in her early 50's :)
She was diagnosed a little over 3 years ago...right after I had my fist child was born
She was experiencing nausea which made her think something was not right
Sure enough she was diagnosed with PPC…she went through chemo and debulking which rid her of the PPC she was carrying. However shortly after it came back. We were told this is a reoccurring cancer and even if they rid her body of it most likely it will grow back
We did not realize it would grow back that fast.
She did a Clinical study that left her feet and mouth riddled with soars….at this point she was also having kidney issues which caused a major infection to take over her body…this fall she spent some time in the hospital to rid her body of the infection and was not able to have chemo while doing so – her CA count rose to 900…..we found this out the day I delivered my son….
She was able to start a new program involving Gemzar one week and then Carbo and Taxol the next week – with 14 days off in between.
Within a month her count went down to 200….
She had a reaction to the carbo drip so now she has to be admitted to the hospital over night when she has the Carbo/Taxol cocktail.
Her energy level is mostly gone at this point – she had a transfusion last week to see if it would help her but it did not have the effect that is has in the past and she is still so tired….I am just praying that she can keep it up and get her counts down so she can be on a maintance schedule and give her body a brake….
It has been a long road since she was diagnosed and I don’t know where it is going to take us….
I do remember when she was first diagnosed we were not sure if we would have her for more then a year….look at us now  she has seen my first son go to preschool and was in the room for the birth of my second son this fall!
You have to have faith and follow your moms lead….

galaxygirl
Posts: 4
Joined: May 2009

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
Posts: 2
Joined: May 2009

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!

overin6
Posts: 1
Joined: Oct 2009

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.

cehjames
Posts: 5
Joined: Dec 2009

hi there, i live in London in the UK and my mum was diagnosed late October with primary peritoneal cancer. her NHS oncologist started her straight away on carboplatin, 6 treatments each 3 weeks apart. we went to a private oncologist (highly recommended at the London Oncology Clinic in Harley Street) for a second opinion because we also have private medical insurance.

The private oncologist said that he agreed with carboplatin as the best treatment, but that as PPC is a diagnosis of exclusion she should have had tests done to exclude the primary site being elsewhere (bowel, stomach or breast). i asked him about the IP chemo and the use of taxol in addition to carboplatin and he said that the IP chemo is not proven to be effective and if the carboplatin does not get rid of it then they will try taxol next. BUT on all the american sites where people have posted comments i have been onto trying to research this disease people seem to talk a lot about these two things:

Combination therapy with taxol and a platinum chemo either carbo or cisplatin as a first line therapy seems to be the standard in the US
AND
A combination of IV and IP for either/both of these drugs.

SO -My question for any of you amazing ladies on this site is: why do you think the standard first line treatment is different in the UK and the US? i cannot understand why it should be different here. Also, they said that as my mum is stage 3a, there is not really any point in surgery because the bits of cancer are too small. i am hoping this is a good thing!

we are all keeping positive and i am making sure that she does not just sit at home and fret. a puppy is my next idea...

thank you for any thoughts you may have that can help me get the very best treatment for my wonderful young mum who is just 59.

Clare

ccarney
Posts: 9
Joined: Jan 2010

Clare,

I was diagnoised with PPC in Jan. 09. I had my first debulking surgery in Feb. Then I had 6 cycles of carbo and taxol and two more of just taxol. Then in Oct. 09. The doctor for more cancer. I had a hystorectomy then. I will be see if I will be making it into the clinical trial EC145 on Jan 12, 10. The reason for the second round of chemo is that I am plactium restiant.

I realy think that you need to get a second option. My doctor is one of the top five in MN and he is having me to both surgery and both chemos.

I wish you the best.

Cassie

cehjames
Posts: 5
Joined: Dec 2009

hi Cassie, thanks for your comments. basically mthe two best doctors i could find in my region of the UK said the same thing, carboplatin....my mum is having a hysterectomy, her omentum and appendix removed tomorrow, then after 4 weeks will start the remaining three carboplatin treatments. we are all hoping that the scans were correct and she has no great big tumour anywhere...anyway first thing is getting over a big operation, and then we will see.

good luck to you, & thanks

Clare

ccarney
Posts: 9
Joined: Jan 2010

Clare,

I hope that your mother is doing well after her surgery. What did they find?

I have had a PET/CT and a CT scan. Both came put that I did not have any more cancer. I have heard this before. Because of the good news I have been taken Tamoxifen. This block the product of estragen in the body. I hope that this works for me.

Have the doctor do a test to see what drugs will not work for your mother. My doctor told me that all doctors that the carbo route because that is the way they were trained. But if they use this test then they can use a drug that really work on eradicating the cancer.

I hope that this helps.

Thanks
Cassie

cehjames
Posts: 5
Joined: Dec 2009

Hi Cassie,

They found a little bit of cancer on one ovary, but nothing else and said the carboplatin chemo had worked very well and there is no visible cancer inside her now. she will have 3 more carboplatin treatments and then will be technically in remission. the surgeon and oncologist have said that it could not have gone more smoothly...i am really over the moon but a part of me is scared that it will come back soon, though i dont know why other than a lot of blog posts seem to think this is a cancer that will not go away.

i will mention the idea of tamoxifen to her so she can ask the oncologist the next time she goes. is there any other follow up treatment or lifestyle things she could consider?

Great to hear that you are clear! thank you very much for your help.

Clare

off2parisfrance...
Posts: 1
Joined: Nov 2009

Dustygal1030 every day I look for another small sign of Hope. You were my sign for today!. I was just diagnosed November 9th, 2009. I had a tumor all twisted up in my intestines pressing against my rectum that was about the size of a softball. I too had some spots of cancer on my diagphram, lymph nodes and omentum. I had a colon re-section and my debulking surgery on Nov 12. I was so VERY HAPPY to read your post and look at the DATE of your post!!!!!! I will start chemo on Jan 5th and be part of the clinical trial currently be conducted at: UNC Chapel Hill!!!!!! Yes! Another reason to be oh so happy!!!!! I am a survivor of breast cancer too. I was diagnosed Feb 17th 1999 with a stage I, one centimeter tumor, 4 rounds of chemo, modified radical mastectomy and prophylactic mastectomy on left side... and here I am.
Once again thank you so much, I'm checking back every day!

galaxygirl
Posts: 4
Joined: May 2009

Hi Dustygal1030
Hoping this finds you in good health. It's been a year since you posted and I was wondering how you are doing. I am in my second year of this frustrating disease. After so many ct scans and finding nothing except that my CA 125 was out of the norm. It never was higher than 250 so the drs. never seemed that concerned. I did look pregnant and had other symptoms. Finally drs. agreed to do exploratory surgery and found stage 3 PPC. Treating it as though it was ovarian. I was in a short remission for about 5 months and then back on chemo ever since. My CA 125 is again starting to rise and my current ct. scan came back ok. I've been through so many chemos,so how can one not be frustrated.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I was diagnosed with PPC last November and have just finished chemo - carbo/taxol. I didn't have surgery but a CT found the cancer. My CA 125 is down from 1119 to 65 so i am now waiting to see how it behaves off the chemo. However I have a friend who was diagnosed Sept 07 and she is still well and in remission.

Keep in touch, I go on the ovca boards and chat to ladies on there.

Tina x

VERINHOPE
Posts: 2
Joined: Apr 2009

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".

ChicagoRia
Posts: 2
Joined: Aug 2009

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

bentleys mom
Posts: 2
Joined: Sep 2009

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!!!!

MInurse26
Posts: 5
Joined: Nov 2009

so you are still in remission? I am 26 and was diagnosed in June 2009, I feel alone.. the only other peritoneal survivor I knew just passed away last week :( I had a hysterectomy in June and have had 6 rounds of carbo/taxol and so far all of my scans look good with the exception of a few lymphoceles.. I could really use some inspiration.. All I wanted in life is children.. newly married to top everything off..

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hello Mlnurse

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

Don't give up Tina xxx

donnarod
Posts: 6
Joined: Apr 2010

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

ccarney
Posts: 9
Joined: Jan 2010

Minurse26,

I was 38 when I was diagnoised. The OB found it when doing a laprascopic procedure to find out why I could not have childern. I understand how it feels to be alone. My doctor introduced to me a women who is about 10 years older than me and did not want childern so she really does not understand how I was feeling. I do understand I am older than you, but marriage and childern were what I want.

I know that this is hard to go though. My husband and I really wanted childern and still do. So I am hoping to adopt a child in the near future. This too can be you. Keep you head up. You are a survivor for a reason. Please email me anytime. I would love to talk to you more.

sports_massage@hotmail.com

Keep your head up HIGH!
Cassie

PS I live in Minneapolis, MN.

tes55
Posts: 1
Joined: Jun 2010

My 35 year old daughter was diagnosed with adencarcinoma of the mullarian origin then after a complete hysterectomy the new term is peritoneal cancer. She just had a son 8 months ago while she had this cancer. So I consider my grandson a real blessing. I wanted to know if everybody survives this cancer? Thanks Mom (caregiver)

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have Peritoneal cancer and it is classed as a chronic cancer. They can't offer a cure but they can manage it with treatment. I have read that ladies can be in remission years before a recurrance. You need to check out the Ovarian Cancer board as there are a few ladies on there with this cancer and there advice is great.

Peritoneal cancer consists on tiny cancer cells that are on the outer lining of the abdominal cavity. The chemo that they treat this with aims to shrink them or kill them off. Sometimes they can offer sugery - it depends how it is spread and how large the cells are. Mine were quite small so I didn't have surgery. I had 6 rounds of chemo Carbopatin / Taxol infusion. I finished March 26th and my CT scans shows a great success. I have a blood test next week and then an appointment with my oncologist to find out my prognosis and long term treatment options.

I am 50 years old and this cancer is rare. I have a friend who also had this cancer and she is still cancer free after 3 years. The longer you go without having to have a second round of chemo the better your long term chances of being cancer free are.

Love Tina xxx

Michele Schwarz's picture
Michele Schwarz
Posts: 2
Joined: Jun 2010

Tina -
Your post was inspiring!

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

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

Thanks for listening!

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am sorry to hear about your awful cancer experiences. However your CA125 is really low which is fantastic as anything between 0 -35 is consisdered in the normal range. I am sorry that you are unable to have more children but you are blessed with a 9 year old son - how wonderful.

Chemo is tough but bearable. It is horrid to lose your hair but it is also a nice feeling when you finish treatment to know it will grow back - a bit like an extra bonus!!!! The survival rate is questionable - that is how I look at it, but as they are able to offer treatment then I am hopeful I can stick around. You have to do what is necessary to beat this thing. Your husband and son will be alright and they will be so pleased that you are being offered treatment - so don't worry about them. The best thing you can do for them is to take what ever treatment you are offered and be their as a family to support each other. Children are amazing and they can handle a lot more than you realise!!!

My children are all grown up now and live away from home but they have been brilliant with me and have continued as normal - which I am pleased about.

Take care of you and your family will benefit from that

Love Tina xx

sally budesa's picture
sally budesa
Posts: 1
Joined: Jul 2010

I too find you very inspiring,my first onc appt is tomorrow so
I don't have alot to tell at this point other than I have been dx with peritoneal cancer, I had a complete hysterectomy in 2003 due to uterine cancer but they said my ovaries were benign but removed them due to they were covered in tumors. I would really like to chat with you.

CousinErin
Posts: 1
Joined: Jul 2010

Hi Michele,

I have a cousin named Michelle that was recently diagnosec with PPC. She lives in IN. I would love to speak with you more if you have a chance. Please email me at waycoolbmwfan@yahoo.com if possible. Thank you!

memaw8
Posts: 2
Joined: Mar 2010

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

blue802's picture
blue802
Posts: 17
Joined: Aug 2010

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

donnarod
Posts: 6
Joined: Apr 2010

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

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