Primary Peritoneal Carcinoma

[hameenie]

My mother was recently diagnosed with Primary Peritoneal Carcinoma, which doctors say has not spread to the lymph nodes or anywhere else detectible.  The tumor was removed about a month ago (along with a hysterectomy) and Chemotherapy was started 2 weeks ago.  Information is very scarce on this type of cancer, and I wanted to ask the following questions:

1)  What are the real chances that we can beat this?

2) Are there any alternative treatments we should consider to the Carboplatin/Taxol combination?

3)  How difficult will the chemo be on my mother - she's 67 and strong, and 9 treatments have been ordered?

Any information (general or otherwise) you can provide is VERY appreciated.

Thank you.

[berryterry]

I just noticed how long ago this thread was started.  Hope my info helps someone.

Terry

[berryterry]

I was diagnosed at age 65 with PPC, stage 3C in May of 2007.  My CA125 was 1285.  I luckily found an excellent Gyn Onc who did the debulking surgery and at my request put in a peritoneal port for chemo.  My son did a ton of research in the 5 days between diagnosis and seeing the Dr. and found that the American Cancer Institute recommended interperitoneal chemotherapy to those ovarian cancer and primary peritoneal cancer patients who had optimal debulking surgery and were considered healthy enough to handle a more aggresive therapy than IV taxol/carboplatin.  I had 6 rounds of day 1 taxol in 24 hour drip, day 2 IP cisplatin, and day 8 IP taxol.  After surgery and 1 round of chemo my CA125 had fallen to 46.  After the second treatment and since that time my CA125 has not been above 5.  It was brutal treatment but I was able to get through the regimen.  It has been a year since the completion of the treatment and I am in remission with my last CA125 of 3.  I did have one serious complication, a partial bowel obstruction which resulted in surgery and loss of a large portion of small and large intestine.  Today I feel great, am walking 3 miles a day and enjoying life to the fullest.
I know that there is a good chance of recurrence but tomorrow is a mystery and I don't dwell on the possible.  Today is a gift.  Even though the treatment was hard and I did have complications,  I would highly recommend the IV/IP protocol.

Terry

[renored]

seems like you are knowing more about this cancer.  the comment you left offered some inspiration.  my mom was just diagnosed with stage four ppc.  she has the added issue copd.  the dr seems to think she may tolerate chemo taxol and paraplatin for 6 treatments.  he thinks she may get a few more years.  her only thought is what chemo used to be years ago and she/s not sure if she wants to try treatment.  it is my understanding that the fluid in her belly will continue and do what?? just drown her? any extra info would sure help. thanks   renored

[benfranklin]

What was the CA 125 at diagnosis?

What was the CA 125 after surgery?

What was the CA 125 after the first chemo?

Was ascites present?

What is the official staging?

I do know a lady who beat this PPC and is now out
five years from diagnosis and is cancer free.  She used a combination of
surgery, chemo (brought CA 125 from about 300 to about 200 and then it got stuck),
an alternative treatment (brought CA 125 from about 200 to normal in 4 weeks),
a 2nd surgery and is now doing great
with a clean scan and a normal CA125.  She had a major ascites problem
which went down very quickly under the alternative treatment.

Best of luck to you and your Mom.      BenFranklin  

[joseph111]

i found this health issue a very interesting one... and hope the information will be helpful to you both!
i worked very closely with  a patient in nauru in 2007 who happened to have the same diagnosis of a primary peritoneal papillary carcinoma (PPC) and therefore had to do a bit of research on the topic (as its very rare as you ahve rightly said) and was helpful to get some added info from drs. in australia where my patient was transferred for treatment. the shocking news is that this cancer occurred in a little girl at a very young age of 1!  the cancer was in its final stage with metasteses and that none could be done but palliative care/treatment.
how? im been embarked on a research study to find out the cause and to know more about the disease and hopeffuly be able to avoid future tragedies!
prognosis is very poor with a very high mortality rate. it took this child a few months of agony from being diagnosed before succumbing to the disease. she had alternatives as you mentioned and many more treatment options which all but made her feel more ill. she showed less symptoms without and felt better without treatment. reggularly she would be in for an ascitic tap (removing fluid from the abdomen) only for symptomatic relief. and morphine for pain.  
PPC is highly associated with asbestos (~83%) but for this child i dont know the cause but havea few hypothesis i will try to investigate. she will be the youngest ever in literature for this type of cancer.
the cancer is very invasive/aggressive and very difficult to contain because it affects the peritoneum (covering and blood supply to intestinal tract) and spreads very fast. even stages 1-2 are very difficult to treat. prognosis is poor and mortality rate is high. i have learnt this in literature only but would also be good to ask a consultant specialist in oncology for treatment options and prognosis.
you could also find more information on the "www.emedicine.com" website on the topic of "peritoneal carcinoma".
i hope this is of any use to you both and i assure you that my family will be thinking of you all in our prayers!
God bless.
Dr L'amour Hansell
Anesthetic registrar
CWM Hospital, Suva
Fiji Islands

[elena f]

almost exactly same thing is happening to my mom. She is 65, had the surgerty 2 days ago, pathology is not back yet, however doctors say they believe it is stage III A primary peritoneal cancer. It was small and apparently all out. Ovaries looked good (hysterectomy was performed), omentum had tumors (removed). We are waiting for treatment suggestions. They left a port to be ready for chemo.
I have the same questions as you.