Primary Peritoneal Carcinoma

On 8/21/2003 Deborah R. wrote:

My mom was diagnosed with Primary Peritoneal Carcinoma last march. I am having a very difficult time finding information on this type of cancer. Her doctor tells us it behaves and is treated the same as ovarian cancer. She is getting ready to have her 6th chemotherapy treatment and I am worried because her ca-125 was originally 2938 and after she had surgery and 5 chemo treatments her ca-125 was down to 91 and all of a sudden it is now up to 111. Does anyone have any information on my mom’s cancer or what this ca-125 going up may mean? Deb H., MN

On 8/21/2003 Deborah R. wrote:

My mom was diagnosed with Primary Peritoneal Carcinoma last march. I am having a very difficult time finding information on this type of cancer. Her doctor tells us it behaves and is treated the same as ovarian cancer. She is getting ready to have her 6th chemotherapy treatment and I am worried because her ca-125 was originally 2938 and after she had surgery and 5 chemo treatments her ca-125 was down to 91 and all of a sudden it is now up to 111. Does anyone have any information on my mom’s cancer or what this ca-125 going up may mean? Deb H., MN

 Reply to Deb H.

         I am interested in your situation because my wife has peritoneal Carcinoma and we are tracking her CA-125. My wife was diagnosed June 1 and had surgery June 12th. On her first chemo her ca 125 was 2600,came dowm to 1960 after her second and now she has done her third chemo and we have seen the biggest drop she is at 260. We are praying that her fourth chemo on the 28th of August will bring her rate down to double digits.

        We will be praying for your mother and hope to see that her rate has turned back to a declining direction. Please keep us posted on her test results. Good Luck.   

                           Bearman

On 10/4/2006 Curlylocks wrote:

Just read all of your messages and am so thankful to have found this board. Thanks for all of your posts. It really is hard to find much information on this cancer. My mom has PPC too... was diagnosed spring of 05. After surgery to remove her omentum she had an AWFUL few weeks in the hospital and then had to go back after she caught a bad infection following the first chemo treatment. Anyway, she made it through the six months of chemo and got back to a good standard of living... then I guess it was sometime this summer she started having trouble again... and has tried two different chemos this time... which don't seem to be helping... she keeps getting that fluid build up. About six weeks ago she had 4 litres drained... and then this week she had about the same drained. I guess one thing I'd like some more information on... or to hear your experiences... is once this fluid build up starts... can anything stop it? Will it just get more frequent? It seems so awful... what happens next??? This is a really mean cancer... and it has shown us how strong our mom is. She battled an unrelated breast cancer back in 04 only to have this pop up on 05. Its very strange to me that she got two cancers... and the drs say they are completely unrelated.... like getting hit with lightning twice. So anyway I just feel so bad for what she's having to go through and wish there was some better treatment for this one!!! I'm with whomever suggested we need to raise awareness of PPC. It is so closely related to one type of ovarian cancer... so maybe we could team up with them...

On 1/18/2007 Wendymoo wrote:

 

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 Wendy,

I haven't been on this site lately so I just saw your message.  My mom is doing pretty good.  She is still on chemo and is tired.  But to put that in perspective she played a round of golf today.   I believe that her tumor was between the liver and the pancreas in an area where they could not operate.  They discovered it by doing a scan after her CA125 test came back higher than usual.  Her CA125 level was at 900 which is elevated but much less than the 9000  level it was when she was first diagnosed with ppc in 2000.  I think that she was very lucky that they were able to see the tumor as that area is not always easy to see. 

I referred to her tumor in the past tense because we are hopeful that it is gone.  She is meeting with her doctor tomorrow to go over the results of her latest scan.  Her scan three months ago showed that it was less than 2 cm, down from 6 cm when previously measured.  Her doctors seem optimistic that the chemo can wipe out what is left of the tumor.  I just thank God that the chemo seems so effective for her.

I'm flying up to see my mom next week, she lives in another state and we are going to attend a seminar on genetic testing and ovarian and breast cancer prevention and early detection. 

I hope you are doing well.  Best wishes.

On 4/6/2007 Daughterofduree wrote:

I have just found this site and want to share my story with everyone.  My mother was diagnosed with PPC in 2001 at the age of 70.  She went through a course of chemo and has been without symptoms since, although her CA 125 (as low as 25 when she completed chemo) has steadily climbed these past six years.  She has had regular blood tests and CT scans every 4 months.  Recently her CA 125 more than doubled from 800+ to 1700+ since her last test.  Today she had a CT/PET scan and we are awaiting the results.

We know that she responded to chemo the first time and are optimistic that she will respond again.  The doctor says there are at least three new chemo therapies that have been developed since her last treatment.

I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available.

My thoughts are with all of you dealing with this dreadful disease and those who have lost loved ones to it.

Holly

Hi Holly,

 My mother was diagnosed 2 yrs ago with primary peritoneal cancer, she had been suffering for years with burning in the upper abdomen and esophagus, acidy stomach, just general gastric problems, doctors here locally removed her gallblader, put a stent in her liver with no relief, it was only when she began to get fluid on the stomach did they do a ct scan....it showed "thickening" of the peritineum, her general practitioner diagnosed ovarian cancer, but sent her to a specialist in Vancouver Wa. Thank goodness he did.. What a wonderful Doctor, he knew exactly what it was, (ppc) he did surgery the next morning and removed a tumor that had grown completely across her stomach (It had not penetrated the colon which was very good news).  Her chemo has been non stop up till current, she was going once a month since diagnosis, now that her ca-125 numbers are increasing she is going twice a month...the doctor has told her that she will always have to have some kind of chemo, so that the cancer can not run rampid, I am grateful for the 2 yrs since her diagnosis that she is still with us, your message gave me hope that she can hopefully continue more years.(although the latest ct scan showed lesions on the liver, one on a lung and now on the colon)  It is very hard to keep the optimistic feelings going, so many hills and valleys.  I am glad that your mother has responded well to chemo and that there was time between therapy...There are obviously many different chemo situations depending on the severity of the first diagnosis and many different outcomes that can't be predicted, reading your story today help me know that this terrible cancer can't keep everyone from living a longer , fulfilling life...my prayers for a positive out come are with you and your mom...just wanted to say thanks for posting and letting me tell my story. Victoria

My mom was diagnosed in August of 2005. There was no surgery to perform on her. She had felt awful for 8 months and was not diagnosed right away.

After her first 6 months of chemo her CA 125 was down and went without chemo for about 5 months. After that she had about 6 different types of chemo all together. None of the chemos seemed to help. She aways had fluid removed from the outside of her lungs…4-6 liters at a time. Seems like it was happening faster and faster. Then last Feb. she started to fill up in her abdomen area too. They had to rotate which spot they took the fluid from. Seems like the more often you drain the faster the faster it builds but they have to have it done…

So to answer your question no it can’t be stopped and it will become more frequent. This cancer has no cure yet.

It is a very mean cancer and it does show how strong mom is. It was a very hard way to watch mom pass away. My mom passed away Memorial weekend this year (2007).

I'm with whomever suggested we need to raise awareness of PPC. It is so closely related to one type of ovarian cancer... so maybe we could team up with them...

Hi my mom was diagnosed with peritoneal carcinoma on Oct 16 2007

I went home to be with her and just got back cuz I have my husband and kids here in Texas.She was given stage 4 her markers are at 3362.We are so scared for her.She has had a total of 3 drainings in a month with 4 liters out each time.She has been admitted 2 times already in the hospital.My sister is still with her and my dad.She has trouble with hemmoriods so bad she literly sceams using the bathroom.She has so much pain in her stomach that she cries all the time she already had the 1st round of chemo she did ok with it but she has her next 27 Nov.I guess thats when they will check her CA-125 again.She has to go through 2 more after that one with a total of 4 then they will do surgury.Her docs seem to keep painting a rosy picture but its hard seeing her go through this.Prayers are coming from everywhere.I just pray they work. My mom has diabetes high blood pressure and is 68 yrs old.Also her BP keeps dropping real low. but then if she stops the meds it goes up.No win there

How common it it for her to get better with it being this bad.I want to go back and be with her.All anwers are appreciated Please do not hold back.

Thank You