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Carole’s 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 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, and I hope I’m as lucky. Treatment for peritoneal cancer is identical to the treatment for ovarian cancer and 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 was grateful for several months of remission and a benchmark CA 125 blood test (measuring disease in both my peritoneal cancer and 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
As of April 2014, with the benchmark CA 125 number at 327, I was back on chemotherapy but still without clinical symptoms. My CA 125 number declined over several months on chemo but never got back to the normal range, although it was close. By fall of 2014, CA 125 was climbing again, vague clinical symptoms emerged, and a PET scan showed numerous new cancerous lesions. So with fingers and toes crossed, it was on to a new chemo drug in November 2014. Unfortunately, that chemo drug was too toxic to continue and ineffective anyway. The next chemo drug was ineffective too. Options seem to be dwindling; but in the spring of 2015 genetic testing of some of the tumors in my abdomen pointed to some drugs which might be more effective. Waiting for the verdict.

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

Latest Journal Update

Anchors aweigh!

I've been to the doc & am now implementing what he recommends. This time it's a pill taken twice a day, so that's good that I don't have to deal with office visits for intravenous infusions. I see the doc once a month & have lab tests once a month. I wasn't explicitly told this, but I assume it will be at least a couple of months before any change in my condition can be observed.

The drug is Xeloda®, generic name capecitabine. Never heard of it until I saw the recommendations from the genetic testing of my tumors; & none of the ovarian cancer patients I've met online—whose cancers generally get the same treatment as my PPC —have ever mentioned it. It's so rare that pharmacies don't stock it, as Doug & I discovered after a fruitless quest around town yesterday. Finally we were advised @ the 2nd Costco we visited that they would have to order it. The technician hesitated because I need only 28 pills for my 1st prescription. "The smallest supply available is a bottle of 100 pills for $3,000, & I don't know if we'll be able to dispose of the remainder." Told him I expected to live long enough to use up the entire amount, so he & his boss were persuaded. Luckily, my co-pay is $8.00. The pill supply arrived @ Costco today so I'll start on the pills tomorrow. Potential side effects seem similar to most other chemotherapies, so—fingers crossed.

Scheduling & similar snafus continue @ the doc's office. I patiently waited while the doc's staff tried to sort them out. When I finally saw the doc, he acknowledged that one of the problems arose because he failed to enter some data in the computer. When I was whining later to a friend, she said, "Tell me again why you changed to this doctor." I explained the whole thing again, including the fact that the ranking by U.S. News & World Report of Tucson gynecologic oncology surgeons—a rare specialty—lists mine 1st among only 7 such doctors in the city. I know 2 of the other docs on that list. The 3rd is the U of AZ Cancer Ctr doc from whom I got a 2nd opinion a while back, & the 4th is the surgeon who operated on me for a benign tumor 6 years ago. Others on the list are much older guys. So despite all my complaints, I'm quite confident I have the best available unless I were to go out of town.

In 8 days, we leave for 17 days of L.A.-Vancouver-Inside Passage cruises & are busily trying to finish getting ready.

We're looking forward to the world's longest zip line, a mile long @ 60 mph, starting @ 1300' above sea level and ending on the shoreline.

I have my warm clothes, rain gear & waterproof boots, insect repellent, seasick patches, anti-nausea meds for the new chemo pills & just about everything else you can buy at the drugstore. Doggies will enjoy a break from their usual routine @ the pet resort. Cross your fingers for us all!