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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

A ray of hope.

THANK YOU TO ALL FOR YOUR KIND WORDS! ❤️ 💋 ❤️ 💋 ❤️

This a.m., I was a phone call away from hospice. Finally got--after much hassle--the desparately awaited CA125 # from the 2nd Abraxane infusion. Down a thousand more, & down 50% from the 1st chemo infusion. This means something's starting to work. So hospice is postponed for now.

What's more--woke a few hours ago WITHOUT the agony of intractable pain for the 1st time in weeks. Hoping for more of the same.

Tomorrow--to a NEW hospital for more gut-punching to drain fluid, & maybe some time to relate recent hospital horrors. My bro arrives soon, & I think Doug's sister does too. Poor Doug is burdened & ultra-stressed, having to deal with new drugs, a complicated drug routine, learning how to keep me on oxygen, getting our traveling circus to appts, & dealing with my every need by waiting on me hand & foot. And then there are the dogs. 



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Comments

25 Comments

Marjorie Shaw
By Marjie
Carole, I've missed some of your recent messages except for the one with the possibility of hospice. I'm glad that something better is in the offing. I'll search for earlier messages. (I have't been able to climb the stairs to my computer because of a recent surgery I had.) Know that I am praying an hoping constantly that something will turn around for you. Let's hope this is going to be it.

Much love to you, Doug, and the dogs.
Trudy O'Leary
By Trudy and Pat O'Leary
I am writing this for Trudy as a week ago yesterday she fell while walking with her son Chris, fell and broke her neck. She is here at home with a neck brace and so on to her waiste She may be in the brace for 121 weeks. She is not writing this as she can not see the key board but wants you to know she has been thinking and praying for you a lot. In the short term she will not be playing tennis but then she likely has not played tennis for 60 years, the only thing she might swing a tennis racket at is me. Patrick O'Leary. Prayers from both of us.
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Kathleen Kramer
By Kathleen Kramer
Carole, sending all my love to you and Doug and the puppies. Am glad to hear that the pain has eased.

Kathy
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Melanie Schuling
By Melanie Schuling
Hi Carole... Just sending some hugs your way. It's taken me awhile to see this is probably the best way to stay up to date...I am so glad to know you are having relief from pain. Xxoo melanie
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Patti Brown
By Patti
Thank God for small miracles! Love to you and Doug. Luckily you married one of the nicest guys in the world.
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Virginia Towne
By V
Love to you and Doug, it's a bumpy ride but with love all things are possible. Things are stressful for both of you, just remember to lean on each other and smile through your tears. One step is all that is required each moment. Just that one next step.
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Janet Huls
By Janet Huls
glad for the good news, prayers continue
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JoEllen Cron
By Jo Cron
This is great news. Glad the pain is letting up. Awaiting more good reports.
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Susie Ellis
By Susie Ellis — last edited
We'll take it! Sending strength and some kick-ass vibes. And of course love and hugs....
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Susan Merrick
By Susan Merrick
So glad to hear your hopeful news!
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