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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, & 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.

Latest Journal Update

Tomorrow, tomorrow . . . .

“This is not good news.”

So says my oncologist, who called half an hour ago with results of last Friday’s PET scan. Seems I have half a dozen small new tumors—on the liver, adrenal gland, colon, and the peritoneum itself. Told him I am not surprised to learn this—since for at least the last several weeks, I’ve had assorted abdominal pains reminiscent of those I had at the time of my initial cancer diagnosis 2+ years ago. Also, the pleural effusion—fluid in the bottom of my right lung—has doubled in size since the March CT scan, perhaps accounting at least in part for my shortness of breath on exertion.

He’s going to call my surgeon, with whom I have a date tomorrow, to discuss new therapies, “since what we’re doing obviously is not working.” He said it’s common for a cancer drug to stop working after a time and there are many more drugs to choose from. He said my history so far this year shows the Carboplatin, which I’ve been on since April, has to go and that I now would be considered platinum-resistant, not such a good thing, instead of platinum-sensitive, which I was in 2012 and 2013 when I responded well to the combo of Taxol and Carboplatin.

My random reading suggests that each recurrence (of cancers similar to my rare cancer*) becomes harder and harder to treat successfully. I asked the oncologist if I’m correct on that assumption. He was non-committal—but he didn’t say my impression is wrong.

When pressed, the oncologist said he doesn’t have a recommended therapy right now; he wants to talk to the surgeon first and see what the surgeon thinks after seeing me tomorrow. The oncologist also said the surgeon knows of another study, apparently not the ARIEL study I read about, that I may be a candidate for. He apologized again and again for having to call with such dispiriting news.

I’ve spoken to Doug, who just arrived in Mitchell, SoDak, for his annual pheasant foray. I think we agree that I’m not going on any drug trial where I risk getting a placebo. Otherwise, I have no idea what’s next until I hear what the docs have to say tomorrow.

*That's the annoying thing about having a cancer that is less than one tenth of 1% of all cancers: it's an orphan; there isn't much specific info available.

1 person hearted this



Trudy O'Leary
By Trudy O'Leary
As always will keep you in thought and prayer. Your resilience and forthrightness is amazing to me. You are a strong woman. If I didn't know better I would think you were from Lake Wobegone!
1 person hearted this
Carol Haywood
But you & Doug will 'soldier on' through this, I am sure of this!! My Best to you both!!
1 person hearted this
Cindy Forrester
By Cindy Forrester
I'm very sorry. Prayers for your strength and a positive plan from your doctor's appointment.
2 people hearted this
Mary Kramer
By Mary Kramer
Good luck tomorrow. Prayers are with you.
3 people hearted this
Jeff Jouett
By Jeff Jouett
All best to you tomorrow, Carole. Will be holding a good thought, sending up a prayer.....
2 people hearted this
Grace  Ehlers
By Grace Ehlers
Sorry to hear your not such good news. But, we live in times where there are other possibilities for treatment and that is good news. Will continue to keep you in my prayers. Let's hope Doug has fantastic hunting.
2 people hearted this
Virginia Towne
Orphan diseases are hard to deal with. Luckily you are stronger than the average.
2 people hearted this
Judy Meyer
By Judy Meyer
My thoughts will be of you, always. Take care.
2 people hearted this