PRIMARY PERITONEAL CANCER

Sharon-NC said:

Me too
Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

Sharon
sharon2468@yahoo.com
Charlotte, NC

Sharon-NC said:

Me too
Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

Sharon
sharon2468@yahoo.com
Charlotte, NC

onewonwan said:

My mom has PPC, Stage 4, recently diagnosed, w fluid around lung
Love this website.
Very hopeful these stories. Thanks for posting.

My mom has PPC, stage 4. We found out a few weeks ago after she had trouble breathing bc of fluid in her lungs. She's had two thoracenteses.

Neither of us is really impressed w her doctor now bc of some info he's left out or glossing over of procedures.
He also seemed really weary and closed to experimental treatments while 2 other doctors we've seen have mentioned them. We are in Baltimore.

I'm interested in diets and treatments that ppl have tried. She just started chemo, I think carboplatin and taxol.

Her doctor said Avastin has lots of bad side effects (like high blood pressure, bowel perforation, etc) and a higher response rate but no cure rate and has recommended against it (well more like blew it off). Our doctors haven't told us that this is incurable---while still unsure if it was ovarian or PPC, they said there's about a 16 to 20% cure rate.

Is this true about Avastin? What are some other ppl's experiences w it?

Also, two other doctors suggested this GOG Protocol 252, I think the drug is called Bevacizumab if I'm reading this protocol right. Any thoughts or knowledge about this?

I appreciate this site and any comments. Since we're on the fence about this doctor, I'm hoping for some good insight from people who might know more than this guy, he's really frustrating.(Or even suggestions for docs around Maryland).

Thanks
Alex

beth1 said:

Hello Caryn
I was diagnosed in July 2007. It's been a long road. I have learned to live in the moment. My Ca 125 was never elevated. It's not a good test me me either. Dr Warshal at Cooper University Hospital is my Gyn/Onc. He added a HE4 test which may or may not help diagnose a recurrence. I am scheduled for a CT scan of the chest, abdomen and pelvis next week. It's been a year since my last one. I go for internal exams every 3 months. It's really a pain in the butt. Lol. I try to keep healthy and exercise. I gained weight on chemo because of he steroids. They raised my blood sugar.
I just went back to work part-time. I am still tired and I have some neuropathy in my hands and feet. Some days are worse than others. I also had 12 rounds of taxotere for consolidation every 4 weeks. Hang in there.
keep in touch
Beth

Gayle.Rocks said:

Mom was just diagnosed yesterday with PPC
My mother has been suffering with abdominal pain for months and her PCP gave her medication for heartburn. Finally, after draining 4 liters of fluid from her abdomen and finding cancer cells, going through a battery of tests, finally getting a PET/CT, she was diagnosed with PPC yesterday.
We are in the midst of getting a referral to a GYN Oncologist and getting our first appointment and treatment plan.
I am so grateful that in my investigation of this disease, I found this site. What a godsend you all are for me. This is so scary – Maybe you can help me.
I plan go accompany my mother and father to her first few appointments as they have a tendency not to ask questions and forget what they were told. I know that they think I’m treating them like children, but secretly, I think my mother is glad that I’m coming along.
I wanted to ask your advice. What questions should I be asking? I’m hearing lingo on this site that I don’t understand. For example: What is Ca-125? I need to be prepared because I know that I’m being relied on and I don’t want to let my mother down.
Mom was 79 last month – I see on this site that many of you are younger than I am – Can I hold out hope that my mother will survive this? Is this genetic? How should my sister and I watch out for this cancer?
I appreciate anything that you can do to help us.
XOXOXO
Gayle

confuzzled said:

I am thrilled to find this site!!!
Hi everyone I too have been diagnosed with PPC. I have recently found out that I am platinum resistant, which means that the carbo/toxil mix did not work for me. I just received this diagnosis 2 weeks ago. I have never been so depressed in my entire life! I was told by a gyn oncologist that I was a perfect candidate for a new clinical trial only to find out that I wasn't because they will not perform the debulking surgery due to fluid and nodules in my lungs. To say that I am terrified is an understatement. I have an appointment tomorrow, with my regular oncologist, to discuss the Doxcil treatments that they are going to start me on next. I hope that this next round of treatments will finally start to reduce the cancer. I am getting married next June and I hope to be able to celebrate not only my marriage to a wonderful man but also my life.

Thanks for listening.

Jane

Tina Brown said:

Hello Alex
Firstly welcome to these boards. I am sorry to read about your mum but WOW it is the exact same as me. I am stage 4 PPC and was diagnosed with fluid around both lungs. Had 4 chest drains and 1 plueradesis. My CA 125 was 1119 and I was put onto carboplatin/taxol the same as your mum. I had 6 rounds and my CA 125 came right down to 34 at its lowest.

The reason the fluid was on the lungs is that the cells that are attached to the peritoneum would've somehow migrated to the lining of the lungs. Once in the lungs they weep fluid and block the drainage points. That is why the fluid stays in there. Once the chemo kicks in the body re-absorbs the fluid and your mum will be able to breathe again. I have been fluid free since Jan 10. Did your mum have fluid in her abdomen? What is her Ca 125?

I am in the UK & I don't think we use avastin. The othjer ladies on here may be able to advise you on this drug.

I am sorry your doctor hasn't been open with you - you must feel very scared and let down.

PPC is rare, and the statistics are often doom and gloom because of this. I guess the ladies on here will advise you about changing your doctor and choose one who is a gynae oncologist.

Please feel free to ask me anything. Love Tina xx

Tina Brown said:

Hello Hannah
Sorry to hear of your mum's illness. I guess she is on carboplatin and maybe taxol? Her CA125 is quite low which is a positive sign. I too have PPC & my CA125 was 1119 when I was diagnosed. The chemo is like a poison so I guess her body will react to that. Let the nurses and doctors know all about her symtoms and they should be able to do something about it. I had anti-sickness meds. Chemo sometimes causes diarhoea so I am sure the nurses can give her something for that. My chemo was every 3 weeks too and I had 6 lots altogether. If your mum is on taxol then yes she will loose her hair. It will start to come out 3 weeks after the first chemo.

Unfortunately PPC can't be cured but the chemo can control it. I have a friend with PPC who has been in remission for 3 years. With me, I felt ill a few days after my chemo. After about 3-4 days I was my old self again and was able to get on with my normal life. However, the chemo is accumulative so with each one you feel a little more ill. By the time my sixth one came around I felt pretty ill (just felt poorly but not sick or anything) and used to stay in bed when I felt ill. The thing with me was the fatigue & I used to give in to it and go to bed or lie on the sofa.

I wouldn't choose NOT TO HAVE CHEMO. The chemo is not so bad and do not dread the thought of having to have it again. It is bearable.

I hope this has helped. Please post again so we know how your mum is doing.

Tina xx

Tina Brown said:

Hi ConfusedPPC
I am going to reply to you using a new thread as there are over 70 messages here and it is hard to find things.

Tina

ginacook said:

PPC
Hi Tina
I am new at this. My Mom was just diagnosed Sept. 2010 and has had one treatment of carboplatin. Can I share her history?
86 yr old female in really good health
no previous medical problems except HBP and COPD and a slight heart murmur
began feeling "full' toward the end of July. Had some Shortness of breath just prior to that. Went to see family pract on the 28th of July and on the 7th of Sept. Her family doc thought she was just obstructed but decided to do CT scan anyway which showed ascites(Sept 9)
Parasynthesis performed and 3.5 liters of fluid drawn off (Sept 10)
CA-125 was 1100 other lab was generally normal
Fluid cytology was positive for adeno-carcinoma cells--origin could not be traced. No masses found on CT
Diagnosed as Possibly ovarian or primary peritoneal carcinoma ---Dr. at West Clinic-Memphis,is treating her for Primary Peritoneal since he thinks that is what she has, but does not know 100% for sure
Had a good EF about 68%
Had her first chemo (carboplatin) on the 17th and has lost 23-25 lbs of fluid since then. Is feeling relatively well. Goes for 2nd treatment on the 8th.
Dr. Tillmanns (gyn/onc) at West clinic has suggested that she also be given taxotere at the next treatment and has mentioned debulking surgery.
Our question is how would she do with just treatments? Could that one treatment send her into remission? What is the normal course? Has anyone on this blog not had the debulking surgery and how are you?
thanks for listening Also, What is a new thread and how is that done? Can I go to the facebook page?
Gina