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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

How many options left?

Got home 10 days ago from 2+ wonderful weeks cruising the Pacific Coast from L.A. to Glacier Bay. Had a lovely time with my brother & sister-in-law amid spectacular scenery. That's my sister-in-law behind me in the photo, which is such a bad representation of a killer whale that I had to have it. Cruising was a chance to push health concerns to the background for a while. Now, back to the real world.

Saw the doctor yesterday for a much-anticipated report on how the latest chemotherapy drug is performing.  I had high hopes because this was supposed to be a therapy tailor-made for me--the first drug to target my tumors based on their DNA analysis. Nice try. Instead of positive results, my benchmark CA125 has risen to levels which are almost where I was 3 years ago at the time of my initial diagnosis. From my previous CA125 reading of 752 in April--when it was already rising fast to far-above-normal levels--it has skyrocketed to 2,166 as of the May 21 blood draw.

There is one small glimmer of hope. The doctor says this result could be a "flare," a phenomenon also seen right after I first started chemo in July 2012. Then, my CA125 rose (but only slightly) after the start of chemo before it started its descent. At the time another doctor said it was because dying cancer cells were expending their last bursts of energy before being vanquished. The doctor said the same thing yesterday. He outlined several possible scenarios, one of which was to start a different chemo right away. But on the chance that this CA125 result is indeed a flare, we decided to test blood again in 2 weeks to see if results are any better. If not, then there will be a new chemotherapy--possibly one of the taxane drugs. If so, it's goodbye to my hair for the 3rd time.

Although I was shocked at the level my CA125 has reached, I really wasn't too surprised to learn it has risen because I continue to have various abdominal symptoms similar to those that first sent me to the doctor in search of answers 3 years ago. I felt something must be going on & wondered recently if it was merely the effects of a new chemo drug. Another thing nagging at me is the doctor's lack of physical exams, scans, etc. He seems to be relying only on CA125 tests which are much less frequent than in the past and which at my first oncologist's were accompanied by physical exams of my abdomen every week. 

Anyway--we are going to see what the next CA125 test shows & then decide what's next. Time again for another opinion? Maybe.

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Comments

5 Comments

Judy Meyer
By Judy Meyer
What's next? Keep up your indomitable spirit! Keep having FUN! Enjoy your life! Remember you have lots of friends, and we are all rooting for you! Don't let those numbers get to you...you are so much more than "numbers". Loved the video of you going down that zip line...it's so YOU; going for the next adventure.
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Patricia Nutt
By PNutt
Hang on kiddo! Hoping it is just a flare. Sending hugs and prayers!
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Verlin Tolk
By Verlin
So, let's hope it's a flare. Sending prayers that results in two weeks show real improvement.
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Cindy Forrester
By Cindy Forrester
I am happy you were able to put this aside and have a good trip. I would get another opinion...it certainly won't hurt! We were always told the CA125 was just an indicator and we shouldn't put too much faith in it. I believe scans and physical exams should always be performed and the results used to determine the best treatment option. Prayers continue.
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