Primary Peritoneal Carcinoma

From what I have learned, Breast Cancer is related to Overian Cancer and if three members of the same family have one or the other, it can be genetic.  My sister had breast cancer twice (5 years apart), and I was diagonised with PPP in October, 2005.  I had the genetic testing done, and it came back that at this stage mine isn't genetic. 

I also had the fluid (my only sympton), and had 2 ltrs. drained, then the hysterectomy, and six chemo treatments.  My CA125 reached 1128 before the surgery.  When the six chemo treatments were finished my Oncologist said that he wanted me to do 6 months maintenance, and the day I thought was to be the last treatment he told me, now I want you to do six more chemo treatments.  I have two left to go and my CA125 os consistently down between BELOW 0 AND 2.  I feel and look great and they are telling me that I should have a long remission.  I am never sick or tired.  Since the day I was diognosed I have been taking 2 ozs. of Noni, Mangasteen and Polmogrante juices (all bought at Costco), and la iquid vitamin. I also drink 2 ozs. twice a day of Flor Essence Tea bought at Health Food Stores, but a lot cheaper on internet.  I get it from Dr. Trust.

 

 

On 8/17/2006 Bobbyjean wrote:

Hello, I am sorry to hear of your loss and hope you are doing well under the circumstances. My mother was diagnosed a two days ago with Primary Peritoneal Cancer. She was not feeling well and had a couple of MRI's which revealed a tumor. They initially thought it was a slow growing form of cancer but a few days later she started accumulating fluid outside of her lungs and had great difficulty breathing. The fluid was drained and it revealed cancer cells which were also confirmed at the same time with biopsy results. This form of ovarian cancer came as a surprise as she had a Hysterectomy thirty years ago unrelated to cancer. Untreated they said she would only have a few months. She started Chemo treatment yesterday with Taxol and Cytoplatin. We hope with the treatment she has a few more years of quality life & your posting gives me hope since your mom had five years.

Hello,

I am new to this site and wish I would have known about it a long time ago.  I am a four year survivor of ppc.  I would like to know how your mom is doing now? 

 My prayers are with you and try and keep a positive attitude.  I think that is the only thing that helped me make it through, besides my family. 

Let me know how she is doing and if you just need to talk, I would be glad to listen.

Wendy

 

 

On 7/20/2006 Annie2 wrote:

My mother was diagnosed with primary peritoneal carcinoma back in 2000. She had surgery and chemotherapy in 2000 and was healthy for the last 6 years. Unfortunately, they just discovered a new tumor so we're going through this again. She really doesn't have any symptoms at this point, they seem to have caught it fairly early this time. We are optimistic. The only advice I have is to hang in there and be optimistic. My mother had a good five years and we're hoping after this next round of chemo she will have more good years. Best wishes.

HI Annie2,

Can  I ask you where the tumor was located and how they found it?  How is your mom now?  Are they giving her the same type of chemo again?

I am a four year survivor of ppc but have been having some weird symptoms although all of my testing has been normal.  I am getting ready to have some ct scans done but I don't rely heavily on that test because it is very deceptive.  They were clear when I was diagnosed and thank god I had an aggressive oncologist who opened me up.....hence I am still here because of her.

Thanks for any information you can give me about your mom,  You are in my thoughts and prayers.

Wendy

 

Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  

 

On 1/19/2007 Too Young wrote:

Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  

Hello too young,

Sent you a private message a couple of days ago...been thinking about you..how did your first chemo treatment go?  Let me know when you come back online and I will be happy to chat with you.  Hang in there

Wendy

My mom was diagnosed with Primary Peritoneal Carcinoma (stage 4) on June 28, 2006. For a year prior, my mom had symptoms similar to someone with irritable bowel syndrome or an ulcer.  She had stomach pains, constipation, and towards the end of May 2006 and until her diagnosis, started to have rapid weight loss, fluid build up in her abdomen and fatigue.  For the year prior to her diagnosis, she had CT scans, ultrasounds, endoscopy's, pap smears, you name it.  All of those tests came back clear until June 28th.  They decided her course of treatment would be chemotherapy.  She was so weak and frail.  They put in a mediport on Friday, July 14th, and that Sunday on July 16th she was put in the hospital, because she got a blood clot in her arm from the mediport.  She was in the hospital and while in there was in excruciating pain.  She was vomiting what looked like coffee grinds and couldn't really eat.  On Wednesday, July 19th, I spent the day with my mom in the hospital and she was vomiting, in pain, lethargic, you name it. They took her for an x-ray to make sure her bowels weren't twisted..they weren't.  That evening we got a phone call saying she was having trouble breathing and she was being taken to the ICU, my mom died at 2:25 a.m. on July 20th., because of a pulmonary embelism  My mom was 58 years old and was diagnosed only 3 weeks earlier.  My mom also only saw her newly born granddaughter for 2 and a half weeks (she was born on June 30, 2006).  I am so angry at this disease.  I am so angry that it is so mean and not easily detectable.  I am so angry that I'm 28 years old and my mom is dead, especially when I need her most.  I am so angry that this disease isn't being researched as much as it should be.  Is there a foundation or something where we can advocate and raise money for research???  This cancer MUST have research. It's mortality rate is very high.  I feel like I need to do something for my mom....for her memory and for the lives of others living with this awful mean disease!

Thank you for listening,

Kelly

Hi Kelly,

I am so, so sorry to hear about your mom.  I can't even begin to tell you how you must be feeling right now.  I am a four year survivor of this disease and everything you have said is absolutely true.  I don't know if there is any research going on out there honey.  I had no symptoms either.  I  guess I was just lucky that I was diagnosed early enough to be treated.  I too, had ct scans and blood work and everything came back normal.  I was lucky enough to have a great surgeon who was aggressive with her treatment and I am still here.  I try to find research being done and I can't find anything so far.......I am sure if you have been reading any of these messages you will find that we are all in the same boat.

Keep you chin up Kelly...I am here if you want to chat.  Take care of that sweet baby of yours....

 Wendy

 

Wendy,

Thank you for your nice message.  I just feel I need to do more for this disease.  I am so happy though that you are a four year survivor...that is wonderful!!!!  What were your symptoms, etc.?  Where are you from? Are you cancer free as of now?  What did they do for you after you were diagnosed?

I wish that I had the money to start a foundation for PPC...it's a shame that it is just not looked at as much, especially since it is becoming more common.

 My sister and I are going on Monday to see a hematologist/oncologist, because from what research I have seen, I have learned that there are 2 genes in your body that may put you at greater risk for developing PPC or ovarian cancer.  We are meeting with this doctor to get further information and for his input on my mom's death/diagnosis. 

 I am so grateful that there are people like you who can lift spirits when needed......I am still so angry though and feel so cheated.  I had a wonderful relationship with my mom (probably better than most mothers/daughters).....she was my life...and we had so much fun together.  It's hard to accept it at all and it seems like each day is getting harder and not easier.  I am on medication and see a therapist to help and that does...but it's hard to come to the realization that my mom is dead. 

Thank you again! 

Kelly

 

I'm so inspired to hear your story Kelly and from those of you that have lived with this cancer for some time.

My sister (42) was diagnosed with PPC in December 2006.  On the Thanksgiving prior her abdomin filled up which is how they detected her cancer.  She started treatment at the end of December and had two ports - one close to her heart and the other in her abdomin.  She finished her treatments in June 2006 but soon after her numbers started to climb.  When she finished chemo in June her CA125 was 6.  Then she started getting fluid in her lung lining so she had surgery last week where they created scar tissue to form around her lung so the fluid would not return.  Thankfully, she has not had the fluid return to her abdomin.  Tomorrow she meets with her doctor to plan her new treatment plan.

Since our mom died in 2004 of stomach cancer I can't stand the thought of losing my oldest sister (I'm the middle) but we remain positive.  It is dreadfully painful to see what they have to go through.

Today I met with a genetisist (sp?) and they want my sister to be tested for BRCA 1 & 2 - which my sister agreed to.

I'm so happy to have found this site and thought I would share my story.

Best of luck to everybody - you'll all be in my prayers.  Kelly

I apologize Kelly - I meant that I was inspired by Wendy.  Kelly