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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

GONE GIRL? NOT YET.

There’s not much in movie theaters that interests me these days, but I’ve been wanting to see “Gone Girl” ever since I saw its cast and director discuss the film on “Charlie Rose.” Finally got there today. If you haven’t already seen it, go immediately. It’s the kind of movie that ordinarily isn’t my cup of tea; I’m not too fond of crime dramas with a bit of extreme violence. But I can guarantee that if you go, you’ll be able to forget everything else for 2.5 hours—even a recurrence of Stage IV incurable cancer.

Went to the movies after meeting with the gynecological oncology surgeon. First news is that he’s my new primary cancer doc. It’s farewell, at least for regular treatment, to the silver fox, oncologist Brooks. I’ve known all along that he’s primarily a breast cancer specialist—probably the best Tucson has to offer. I think I was referred to him because he was across the street from the gastroenterologist who made my original diagnosis. I’ll miss seeing Brooks regularly. But he said he had basically become the middleman, passing along the opinions of the surgeon after conferring with him.  Luckily the surgeon, Hallum, of course is already familiar to me and is a silver fox too.

So Hallum went over the PET scan report with me in detail. There are “hypermetabolic lesions”—cancerous tumors—all over my abdomen: 2 within the liver, 1 in the right adrenal gland, 1 “associated with” the colon, and 2 on the peritoneum itself. No evidence of cancer in any bones—thank goodness for small favors. Although the fluid in the right lung—“pleural effusion”—has increased in size, it’s not cancerous.

The surgeon explained that all these tumors are not surgery candidates at this time. The liver lesions, for example, are too deeply buried in the liver to make surgery a viable option because surgery would be too damaging to the liver.

He also explained the way these tumors show up on the PET scan. The radioactive glucose they shoot into your veins has a certain value—say, 1—in most tissue. But the values for the radioactive glucose in my tumors shows up with values from 7 to 16. These much higher values mean that the areas where they occur are cancerous. (Sure hope I got that right!)

Next: no trials, says Hallum the surgeon. It seems the trial I thought I might be eligible for won’t have me. That’s because, to put it simply, my present status as platinum-resistant with a recurrence means I’m ineligible, as I understand it. Further, Hallum, seems not to put much stock in the PARP inhibitor trials. He says results have been mixed, not semi-miraculous as I’ve read anecdotally. Will have to research this further. Brooks had said I might still want to go back to Dr. Chambers at the U of AZ for her opinion again, and I’ll think about that too.

So: what next? Hallum pulled out a page from the bible, AKA the guidelines of the Natl Comprehensive Cancer Network, which I’ve studied previously. It shows that the gold standard for treatment for a patient like me is one from a selection of drugs, all with roughly equal chances for success. In my case, Hallum recommends Doxil because of potential side effects of some of the other choices and because of the relative ease of administration of Doxil, which requires only once-a-month infusions and should have minimal side effects. I should get to keep my hair.   :-) 

So Doxil it is, I guess, after an echocardiogram to be sure my heart is strong enough to take it. The only drawback is that I will likely need to wait for about two months before any positive results can be measured—so that means many more weeks on tenterhooks. I think another part of my therapy will be an evening cocktail, after hearing from a friend about the extremely civilized-sounding ritual of a daily before-dinner martini with olives AND onions.

Thank you SO MUCH to all my dear family and friends for the e-mails, messages here, and other good wishes. Your support gives me the strength to keep soldiering on.