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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

More good news/bad news.


The good news is, I'll be able to see every single Wimbledon match, beginning to end. The bad news is, I'll be seeing them from my bed in Diamond Bell Ranch instead of from a riverboat cabin on the Danube, Main, & Rhine.

We decided several days ago that I am clearly too sick to travel. Was hoping that chemo scheduled for today would deliver another blow to the nasties in my abdomen--but more bad news. I'm too sick for chemo. What a shock to hear, "your renal function is failing fast." I'm severely dehydrated & other blood values are bad. "If we were to give you chemo now, it could kill you faster than your cancer will kill you." So the plan is for hydration today, hydration tomorrow, hydration forever. (Well, no. Chemo Thursday if I'm well enough.)

One bright little note: CA 125 is down somewhat on the very tough Abraxane, to 2,514 after just one infusion. Still higher than at diagnosis; but hey, we'll take it, right?

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Comments

13 Comments

Carol Haywood
By Carol Haywood
Confirms my suspicion that you can do anything!! (With Doug's help, of course)
Jeff Jouett
By Jeff Jouett
You've been on my mind often lately, Carole, and all day today. Sending you my love and prayerful hydro retention intentions...... --jj
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Esther Staubus Strom
By Esther Strom
So sorry you had to postpone your planned trip but in this case - good kidney function certainly trumps the trip! So...... please get hydrated, stay inside away from the heat, and rest up as you try and get your strength back so you can face that nasty Abraxane again. It must be doing something or your CA125 wouldn't be going down. Too bad it makes you feel so sick. Keep the good fight going - I know you have too many places you want to visit to let down now! Thinking positive thoughts and many prayers for you!
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Georgeanne Irvine
By Georgeanne Irvine
Carole, please know you're in my heart and my thoughts. So glad the CA 125 is down. Also, you're a fighter and you will get through this. Lots of love to you!
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Dan Kirk
By Dan Kirk
CA 125 is down. Take it and run with it. Best Wishes.
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Hilary Towne
By Hilary Towne — last edited
I want to post a string of swear words--that will help no one. You're a remarkable woman, Carole and you have had an incredible impact on me. Your adventures are things I could never dream of experiencing, but you have been gracious enough to tell me so many wonderful stories about your travels. You have a legion of people praying for you--we love you so much. You're not done yet.
XO
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Patricia Nutt
By PNutt
Thinking of you with hugs and prayers!!! Feel better soon!!!
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Virginia Towne
By V
Sorry about your trip, but rest and hydrate. We are all praying for you. Keep on being you.
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Verlin Tolk
By Verlin
Sorry the trip is off for now - I was looking forward to pictures! So hydrate, hydrate - does wine count? We'll be saying a prayer for more improved numbers and some good news in your next post!
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Lynn Oberg
By Lynn Oberg — last edited
God Bless you Carol! My prayers are being said for you daily. You are an inspiration to all!!
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