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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.

Latest Journal Update

GOOD NEWS AND . . . .

NCL Pearl--L.A. to Vancouver
NCL Pearl--L.A. to Vancouver

There’s good news & bad news. The good news: blood test this week shows that on new chemotherapy drug, Doxil, my benchmark CA125 marker has come down a little, to 315 from 351 in December. The bad news: I can’t have any more Doxil, at least for now.

I had a severe reaction, & the oncologist & his assistant say it’s too risky to get more Doxil without further investigation. Early this month on our return from New Year’s in Baja, I developed severe burns on my upper body. It was just like a 3rd-degree sunburn, complete with blisters, & very painful. Cortisone cream helped, & before long I was peeling. More memories of childhood sunburns!

Then last week, I found two blisters, each the diameter of a nickel, on my little toe. One was on the end of my toe, making it a half-inch longer. Thought I was in a horror movie. I was fascinated by the biochemistry: exactly how can a drug pumped into your veins cause such results on the skin surface? The P.A. said the reaction is in fact a burn—a chemical burn—& of course the drug’s effects are cumulative, so it would be dangerous to get more in the same dosage & /or on the same schedule. This news is disturbing because it’s the 1st time since my diagnosis I’ve had to forego scheduled chemo entirely. I know it happens with other patients, but I’ve always felt rather smug that I seemed able to withstand all that chemo regimens could throw at me.* I’ve read that a common description of cancer treatments is “slash, burn, & poison,” meaning surgery, radiation, & chemo. Well, I haven’t had radiation—yet—but now I guess I can say I’ve had the burn part in addition to the slashing & poisoning.

So: what now? First, another PET scan next week to see what my innards look like. The last PET scan in October showed new tumors; of course I’m hoping that this evil drug will at least have done its job & destroyed or diminished those. Then the doctors will discuss whether to continue Doxil on a changed schedule or dosage or perhaps try another drug.

Have to admit that I’m finding all this rather dispiriting. A while back, when another drug was no longer working, the oncologist said, “Don’t worry, there are lots of other drugs we can try.” But just how long is that list of other drugs? I’ve already had the drugs of choice. And my CA125 number has not recently been dropping at the same rate as when I started treatment 2 ½ years ago. The oncology surgeon said that after 3 infusions of Doxil, typically the CA125 number “drops like a stone.” I’ve had 3 infusions, & my CA125 is nowhere near approaching normal.

As if all this weren’t enough to worry about. In a few days I see the orthopedic surgeon who gave me a new titanium knee to learn if it’s time for another one. Sure hope he can put me on a schedule of injections or whatever—anything to avoid another total knee replacement right now. But I’ll have to do something. We just booked back-to-back cruises up the Pacific coast, L.A. to Skagway & Sitka, for May, & I’ll need to be able to walk!

*With the exception of a slight modification to the chemo schedule very early on.

Comments

7 Comments

Marjorie Shaw
By Marjorie Shaw
Oh, Carole, what a bummer! Maybe the cruise to Alaska and back will be just the relaxation you need. When you get back you'll be ready to face all these things. Michael and I have been trying to arrange a short trip to California gold country, but he can't walk because he needs a knee replacement, and I can't walk because I tore my Achilles tendon almost two years ago. I'm now going to a specialist who says it may take up to another year to heal. So, I guess we'll all have to walk a few steps, take a break, and walk a few steps more. Good luck with all your next treatments. I think of you all the time.
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Cindy Forrester
By Cindy Forrester
I'm sorry. My mother is struggling now as well. Seems that after "stable scans" in November and a much deserved chemo break in December, her cancer has decided to make her pay for the break. Praying that the doctor's can get it back under control soon. Chemo again this week...Prayers for you as well.
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nancy ireland
By
...you take on one day at a time and the rest of us will keep sending out those prayers and postive thoughts. The Pacific coast cruises sound fabulous! You can do this!
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Judy Meyer
By Judy Meyer — last edited
At least you are getting good news along with the not so good. I just know that you will find a way to make this great trip (adventure) fun! Keep on truckin' :-)
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Virginia Towne
By
Keep your chin up! Your spirit and intelligence are what I admire most about you. Do something to make you laugh.
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Carol Haywood
By Carol Haywood — last edited
I already posted my comment! Get a grip please!! Special 'Hi' to Doug!!
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Carol Haywood
By
The good news just keeps coming, doesn't it? Congratulations & give my best to your #1 supporter (Doug)!!
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