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My Story

The story begins: Friday, the 13th of July, 2012. Thank you so much for stopping by and sharing your thoughts.

I started this page on Friday the 13th of July, 2012, after a life-changing week which resulted in a diagnosis of primary peritoneal carcinomatosis. I’ve heard stories from people who have conquered other hopeless-sounding cancers, & I hope I’m as lucky. Treatment for peritoneal cancer is identical to the treatment for ovarian cancer & many issues are the same.

“Primary peritoneal carcinoma is very uncommon. Primary peritoneal carcinoma usually manifests with abdominal distention and diffuse nonspecific abdominal pain secondary to ascites [fluid in abdomen]. Survival is poor for patients with primary peritoneal carcinoma, with 100% mortality; the median survival reported is 12-25 months, even with extensive surgery and chemotherapy.”
--Medscape reference section, 8/10/2010

“Peritoneal carcinomatosis represents an advanced form of intra-abdominal and pelvic malignant tumors that has been generally associated with a grim prognosis. The peritoneal component of cancer is often the major source of morbidity and mortality. . . .” 
 --Principles of Perioperative Intraperitoneal Chemotherapy for Peritoneal Carcinomatosis, de Bree & Tsiftsis, in Recent Results in Cancer Research, Vol. 169, Springer-Verlag, 2007

“Malignant peritoneal disease in its various forms is a devastating condition for patients who suffer from it and it poses a significant challenge for the clinicians taking care of them. Research efforts in this field have traditionally been scarce under the assumption of a uniformly fatal and hopeless outcome. In the last few decades a renewed interest in peritoneal carcinomatosis and primary peritoneal malignancies has occurred.  Unprecedented favorable results reported with the employment of aggressive cytoreductive surgery combined with perioperative intraperitoneal chemotherapy have catalyzed a change in the conception and treatment alternatives for these diseases. Selected patients can now be offered a curative-intent combination therapy, whereas in the past only the best possible palliation could be considered.” 
--Advances in Peritoneal Surface Oncology, González-Moreno, Ed.

Through Thanksgiving 2013, I've been grateful for several months of remission and a benchmark CA 125 blood test (measuring disease in both my peritoneal cancer & in closely related ovarian cancer) still in the normal range--but just barely. I was hoping it would stay there, but the CA 125 reading in December was above the normal range. By March 2014 it was much higher, signifying recurrence: 
  • "High values of CA-125 in a woman who has been treated for ovarian cancer may mean that the cancer has returned. Often the high CA-125 level is found many months before the return of cancer can be found in another way."--WebMD
  • "Among patients in complete clinical remission, a progressive low-level increase in serum CA-125 levels is strongly predictive of disease recurrence."--Journal of Clinical Oncology
So as of April 2014, with the benchmark CA 125 number at 327, I'm back on chemotherapy but still without clinical symptoms.

As you can see, Doug has not been entirely successful in his efforts to keep me away from internet search results.

Feed

Carole Towne Seaton posted a new journal entry, "TRAVELER'S CHECKLIST".

BONE SCAN? Check! Good news: "No sites suspicious for osseous metastatic disease are identified." However: "Arthritic change seen in wrists, hands, shoulders, right knee ... Read more

Carole Towne Seaton added a new photo.

Cindy Johnson signed Carole's Guestbook.

Hi Carole-I had the advantage of reading the amended version first, so got the encouraging news of the surgeon!  I am very happy for you and Doug to get the green light ... Read more

Jeff Jouett signed Carole's Guestbook.

Good morning, Boss.... I love you.....you're a smart cookie. You're like an old school journalist. You check things out and get at least two sources before you put it in ... Read more

Carol Haywood signed Carole's Guestbook.

So glad your trip to Europe is still a 'go'!  It's a once-in-a-lifetime kinda thing that's important to both of you. I like the surgeon's opinion better, ... Read more

Carole Towne Seaton posted a new journal entry, "No worries?".

My last Caring Bridge post may been unnecessarily glum. We got encouraging news from the surgeon yesterday. He thinks the oncologist’s concerns about last week’s CT ... Read more

Richard Snell signed Carole's Guestbook.

How wonderful that your Europe trip is a GO!  Be thinking about you and wish you both well.  We are expecting 8-10 in of new snow April 3-4.  Aren't you glad to be out ... Read more

Patricia Nutt signed Carole's Guestbook.

What  fantastic way to celebrate Easter!  Enjoy your trip and post lots of pictures.  Will you have a chance to see Jane?   Read more

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