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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

A new direction?

"There will be a plan."

So says Dr. Brooks, the silver fox oncologist. Saw him yesterday before chemo with questions about my rising CA125 number. It has increased each time it's been measured since July, when the number bottomed out at 46 after the current chemo program of Carboplatin started in April. This time it never did get into the normal range—below 34. Instead, it’s risen steadily, to 57 in August and 65 in September. The surgeon called all these numbers “garbage.” What both the surgeon and oncologist have said previously is although the number is rising, it’s still low, a long way below the 327 level when I again started chemo in April, and I should try not to obsess over it too much. I don’t think I’m obsessing, but I can’t help thinking that this is the first time in 2+ years that chemo has not meant a steady decline in my blood numbers.

So yesterday we talked about the numbers at length, and the oncologist said he had already discussed with the surgeon what to watch for. They agreed, he said, that if the CA125 number reached 100 they would have to reassess. I asked the oncologist what would happen next if I reached that number. “There are lots of other drugs,” he said, running down a long list from which I can only recall Doxil and Taxotere. We also discussed my shortness of breath and difficulty in walking more than a few hundred yards. He said my lungs and abdomen seem clear, but he ordered a PET scan to be sure.

I reminded the oncologist that Dr. Chambers of the U of AZ Cancer Center said in February that when my next course of Carboplatin was no longer effective, I should look for a PARP inhibitor trial. I asked just how “no longer effective” will be measured. “Let’s wait and see what the CA125 number is tomorrow,” he said.

Today I went back for my $11,000 day-after-chemo Neulasta shot. By chance I saw Dr. Brooks in the treatment room. “You’re not going to be happy,” he said. “Your CA125 measured 109.”

He’s right. I’m glum.

The oncologist said he’ll probably have the surgeon contact Dr. Chambers at the U of AZ, since he knows her well. If I do meet all the requirements for the PARP inhibitor trial, it may mean good-by to both my oncologist and my surgeon for the duration of the trial. As I understand, they’re considered Tucson’s leading cancer clinicians. If I have to say farewell I’ll miss them. I’ve come to rely on them and their staffs greatly and am very fond of them all.

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Comments

6 Comments

Jeff Jouett
By Jeff Jouett
Hang in there, Carole. Your smart, clear-minded approach to these tribulations is incredible and impressive. Here's hoping you'll soon be test driving the PARP inhibitors, switching off to a new, improved chemo regimen or one way or another, giving that CA 125 the beat down it deserves. Is it wrong that I started reading your post with a chuckle at "the silver fox oncologist"? Stay in touch with these guys, no matter what the new plan!
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Cindy Forrester
By Cindy Forrester
I'm sorry. I obsess over my mother's CA125 as well. Last week her level was 139, but going down for now. She'll have scans after her next cycle at the end of the month. We know there are other options for treatment as well, but you always hope this is the one. Maybe I should say, hope and pray...You are on my prayer list as well.
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Carol Haywood
By
Your attitude is to be admired (or at least I do)! I suggest you listen only to the good news though!! Read the comments -- you've got an amazing support group here!!!
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Deanne Cervantes
By
I, too, felt glum reading this. I then took a deep breath and realized if anyone can meet this head on and keep one foot in front of the other, it is you, my dear friend. It is you. Love you <3
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Virginia Towne
By
New things are happening, hold on. One step at a time, one day at a time. Just keep going with a smile. Poke fun at me if you need something to laugh at.

You are much loved,
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Judy Meyer
By Judy Meyer
I'm wishing you all the best if you are able to join the new PARP inhibitor trial. One day at a time, my friend.
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