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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's on to a new chemo drug in November 2014.

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

Latest Journal Update

Here we go again.

Got started on my latest course of chemo yesterday, thanks to my longtime oncologist who’s now stepping back in favor of the gynecologic oncology surgeon. So far, no unpleasant side effects, though in the past it’s taken 48-72 hours for the nasties to show up. But I have anti-nausea meds for that, and I feel great.

Chemo wasn’t supposed to start again until next week because my new principal doc is out of the country this week. But I was agitated last week for a number of reasons: 
  1. I was disappointed to learn that I was ineligible for the ARIEL II drug trial which promised exceptional results; 
  2. as I told my oncologist when he called early last week to report the PET scan showed 6 new tumors, I was not surprised because I’d been feeling unfamiliar twinges and pains in my upper abdomen for weeks, just like those I felt 2+ years ago before my original cancer diagnosis; and 
  3. as I’ve written before, I recalled the long-ago comment by a Zoo vet that if he suspected his wife had cancer, he’d rush her to the hospital in the middle of the night and brook no delay in starting treatment.
The new chemo drug—liposomal doxorubicin, or Doxil—has the rare side effect of hardening the heart muscle, so before starting it I had to have an echocardiogram to be sure my heart was strong enough. Had the echo last Friday in the same hospital cardiac unit where Doug had heart surgery in June, and that brought back memories of trying times. But the echo tech said my heart was fine.

Early this week, since the echo result seemed good and I was still anxious, I asked if I couldn’t start the new chemo sooner and the oncologist immediately replied, “Absolutely.” Although originally I was supposed to get chemo across town in my new primary doc’s office, yesterday I got it in the familiar oncologist’s office. That allowed for a somewhat emotional farewell to all the people—nurses, schedulers, the physician’s assistant—who have taken care of me for over 2 years, as well as a long talk with the oncologist about my history and prospects. He was thorough, encouraging and warmly sympathetic as always. 

There is a lifetime limit on how much of this new chemo drug one can get, so the oncologist said I’ll have to have regular echocardiograms while I’m on it. He also said that although I remain anemic, the new doc has not yet scheduled shots of Neulasta for the day after chemo. That may change.

The last piece of news: Dr. Brooks, the oncologist, just called with the benchmark CA125 tumor marker. It’s been rising fast, to 242 yesterday (before chemo) from 109 a month ago. Dr. Brooks agrees with Dr. Hallum that I need 2 chemo infusions—that is, until December--before there’s any hope of it going down. It won’t even be measured again for another 4 weeks.

Thank you again for all the lovely messages of support. I know these posts are bordering on TMI for many of you, but Doug is out of town right now and some of my closest family and friends want all the details—so here they are.