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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.

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Finally got the call today I've been waiting almost a week for. I hoped my silver fox oncologist Brooks would call the day before Thanksgiving with a new CA125 number, but it was not to be. Must have been the holiday that slowed things down.

It was news I could have done without. When I saw oncologist Brooks last Tuesday, he said, "I'll call you as soon as I have the lab report. I think your CA125 is going to be down." Told him I'd bet on it, since the twinges I'd been feeling in my upper abdomen had gone away after my first dose of Doxil four weeks ago.

Wrong! CA125 nearly doubled, from 242 before I started Doxil to 407 last week (before the second chemo infusion). We discussed that the same thing happened when I first started chemo (on different drugs) in 2012. Then, my CA125 rose after my first chemo infusions before heading straight down month after month. Brooks said today the same thing he said then—that the cancer cells are expending their last bursts of energy before succumbing to their nemesis. Besides—Hallum, the gynecological oncology surgeon, said I needed two, maybe three, infusions of Doxil to see a beneficial result. Hallum said I can expect "slight upticks" for a couple of months. Then, he said, "Your CA125 should drop like a stone." Hope they're both right.

About the recent unpleasantness: Brooks asked, "Everything OK now? We're moving on, right?" Right, I said. Couldn't help adding that I felt bad about inadvertently angering Hallum. "Oh, I don't think he was angry," Brooks said. He was, until I had a chance to explain briefly, I said. "Well, he must have been having a bad week," Brooks said, "because he reamed me out pretty good last week too. But we're all moving on—right?" Right!

After all that flap that in part involved a patient web portal, I took time to read some of them more carefully. I have at least four web portals from four docs, all different applications. Most work fine—for instance, I can easily request a new Rx from my rheumatologist. When I do, one of two nurses I've known for many years calls me to discuss exactly what I need & then takes care of it. I studied the info on my relatively new PCP's web portal & found he posts EVERYTHING—including the very first visit summaries from when my primary peritoneal cancer was diagnosed in July 2012. After that first visit, oncologist Brooks started his summary this way: "Mrs. Seaton is a very lovely middle-aged woman . . . ." At the time, I was 66 YEARS OLD! Is it any wonder I'm not totally keen to give up Brooks for the gyn/onc surgeon? Don't know when I've been described so nicely.

A couple of things. Let me say again how much I love all your comments here, your e-mails, calls, cards & messages. They keep me going. Although I continue to feel well & apparently have no chemo side effects, the fight can be draining. THANK YOU ALL SO MUCH for your encouragement.

Also—Caring Bridge seems always to find new ways to ask for contributions. I appreciate very much the contributions that have been made, but please don't let them make you feel you should give. FWIW, they get PLENTY of $$$ as a result of my little cancer blog.

4 people hearted this



Marjorie Shaw
By Marjorie Shaw, with lots of love.
Tell Dr. Brooks we all love him! And we're all moving on with you. I'm glad you're still feeling well--that is a definite plus.
Wishing you a happy holiday.
1 person hearted this
Patricia Nutt
OH!!!! Does that qualify all of us at 66 or older to be described as lovely middle aged women???? Wouldn't that be wonderful! Keep hanging in there! Love ya!!!
1 person hearted this
Trudy O'Leary
By Trudy O'Leary
Hi Carol and Doug,
Great picture of the two of you on Thanksgiving! You continue to amaze me with your courage and humor----keep it up! Vicki was with us for Thanksgiving as was my daughter Libbi and her two children Sam (4) and Violet(almost 3). Vicki had NEVER seen the children so it was quite an experience for her. We had a busy, fun time even though my son-in-law was called home to Texas two days after they had arrived in Minnesota as his mother became very ill and died while he was flying to Houston. It changed a few things but we still had much to be thankful for. Take care and know I think of you often.
1 person hearted this
Carol Haywood
By — last edited
Love the picture and as I've said before, I believe you & Doug can overcome any obstacle(s)!! Keep the faith and carry on!! Always sending my best wishes! Thoughts and prayers to you both!!
1 person hearted this
JoEllen Cron
By JoEllen Cron
No this is not the number you were hoping for. But I am thinking that your body may be reacting like it did the first go round...skyrocket and then plummet.
Sidebar...I am going to suggest to you that you spend no more than 30 minutes daily reviewing, talking, analyzing this nasty disease and the screw up with the patient portal. 30 minutes and then stop. The whole mind thing is a powerful force in your universe. In order to keep that mind healthy, its focus needs to be on all the good things in your life...past, present, and future.
Praying for good Karma coming your way soon. :)
2 people hearted this