×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Carole with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

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

Maybe this will be the one.

RESULTS

Not long ago I convinced Doug he’d like the AMC-TV series “Breaking Bad.” I recorded the recent repeat marathon and he agreed to binge-watch it with me. We’ve just watched the episode near the end where Walter learns his cancer has returned and he’s back in chemotherapy. I can relate. I’ve been fascinated to watch how the various characters deal with Walter’s terminal cancer in the series.

I can no longer count the different chemo drugs I’ve had. I think it’s six. Today was the second infusion of my latest drug, Gemzar. I’m hoping it’s effective but dreading the results. As I wrote in my earlier entry, the previous drug, Doxil, was toxic and mostly ineffective. After three doses of Doxil, the benchmark blood test for Cancer Antigen 125 was 315 on Jan. 20. It had soared by over 70% to way, way above normal—to 543—on the last date for which I have results, Feb. 11.

ISSUES

I am going to have to find a new way to think about my treatment and not be so bothered by the atmospherics. From the time I was diagnosed nearly three years ago, I had the utmost confidence in my original oncologist, Dr. Brooks. The gastroenterologist who referred me described him as “kind, caring, and patient,” and boy, was he right.

I got constant updates, always got asked how I was doing, got all my questions answered, and got called with test results and helpful info. On every visit for chemo, whether weekly or less frequently, I saw either doc or P.A. for an assessment of how I was doing.

Although he treats all cancers, Brooks is primarily a breast cancer specialist. All along he conferred with a gynecological oncology surgeon, Dr. Hallum, and sent me to Hallum for surgery. As my primary peritoneal cancer has repeatedly recurred, seemingly more aggressively each time, Brooks has suggested I should really be seeing Hallum as my primary cancer doc. This was fine with me, despite the blowup last fall over my request to consolidate lab tests with chemo on the same day. (See my journal entry of 11/21/14 for the grim details.) After some false starts, I’m now getting all my treatment from Hallum and his staff. No more silver fox, AKA Brooks, at least for now.

But the whole atmosphere at Hallum’s makes me miserable. They treat me like an Ebola patient, like I’m toxic, and like I’m stupid to boot. The infusion nurses chat and laugh with other patients but barely have the time of day for me. Maybe I’m paranoid—or maybe they really have me labeled as difficult. When I arrived today, no stop to see the doc or a P.A. (I don’t think there is a P.A.) Nobody asked me how I was doing after the first dose of the new drug Gemzar—and I had the worst reaction to Gemzar of any drug, except for the toxic reaction to Doxil after three doses.  Though the Doxil reaction was scary, it didn’t make me feel as generally miserable as my Gemzar reaction.

SCREW-UPS CONTINUE:

  1. The carefully worked out procedure for giving blood samples at a nearby lab, waiting for results, and then going around the corner for chemo went fine two weeks ago but not today.
  2. When I asked what I might do to counter the miserable side effects after my first dose of Gemzar, a nurse insisted they had given me a prescription for an anti-nausea drug—until a check of the records showed they in fact had not given me any such prescription. With obvious resentment, the nurse slapped down a prescription, which I didn't look at carefully. When I took it to be filled, turned out it hadn't been signed and the pharmacy couldn't fill it without calling for approval.
  3. They are not posting lab results to the practice’s patient portal on the web. I assumed a CA125 test had been done two weeks ago, but I wasn’t sure. My fellow cancer patients will understand how we all obsess over this one piece of data to track our progress or lack of it. Almost every day I’ve been looking without success for a new CA125 number. When I asked about this today at the lab, I learned results don’t appear unless the doctor has signed up to post them. So at the doc’s office—not wanting to risk misunderstanding of an oral message in light of the earlier flap—I asked the nurse to give my note to the doc. In the note I acknowledged his not having time for the web site but gently asked if he would consider signing off on the lab results so I could find them online. No answer to my note—although he came into the infusion room and talked to several other patients.
  4. Since I don’t know if I’ll ever see lab results online, as I was leaving I asked the nurse if I could call to see what my CA125 result is. There won’t be a CA125 test result, she said. You’ve had your CA125 test for Feb., she said, and insurance only pays for one test a month. Not true—for over two years, I’ve had a CA125 blood test as often as every week. And as soon as the result was in, my former doc Brooks called me with the result, in addition posting it online.

Here I am in TMI mode again. Writing it all down helps me cope, so thanks for indulging me. Maybe if I contemplate what I’ve written, I’ll see that I’m overreacting. Or maybe it will help me find a way to just go with the flow and ignore imagined slights and actual errors. And maybe Gemzar will be my miracle drug, and all the crap won’t matter.

As always, THANK YOU for your kind thoughts and encouraging comments.

 

heart
2 people hearted this

Comments

6 Comments

Carol Haywood
By
I am firmly convinced that you & Doug can handle anything that comes your way. Good news is always welcome though!!
Jeff Jouett
By Jeff Jouett
Hang in there, Walter....er, Carole. How different people relate to and understand people working their way through cancer treatments really is fascinating, when you take a detached think about it. You'd expect better of the clinic staff, though. Sounds more like a competency issue than a compassion deficit disorder.

I like suggestions that you reconnect with The Silver Fox.....a sympathetic ear (Fennec fox?)......and maybe he can call Doc Hallum and professional courtesy-ish ask for weekly CA 125s to be taken and shared with you, as he has done and as you have come to expect. You might also ask Doc Fox about the once-a-month insurance coverage thing......which he didn't follow and which sounds like an admin assistant's toss-away excuse.

You might also follow up on your note to Hallum.....which, hopefully, he's not ignoring. (Is there a chance that a nurse or assistant shortcut your note and it didn't reach Hallum?) No med degree here, but it would seem that weekly / every opportunity CA 125 tests would be an important diagnostic tool indicating progress, that every oncologist would want to review. It's hard to imagine a specialist who would only check the score once a month, with three or four weeks of potentially helpful information lost between readings. And how much could a test cost? Not like it's a weekly PET scan. The insurance only covers bit doesn't cut it.

I once made a mini-scene when I had to reschedule treatments because the clinic was closing for Thanksgiving, Christmas and New Year's Day. C'mon....the gas station stays open, the Zoo stays open, the Mini-Mart stays open! Let's keep to the schedule and get this done right! Well, maybe that was mini-overreacting. You're no way overreacting, boss. Here's the hope that you'll feel better through the Gemzar and that your "all the crap won't matter" scenario kicks in soon. Until then, you should have done and get to know your weekly CA 125s!
heart
1 person hearted this
Janet Huls
By Janet Huls
hoping things get better with the information, trust the drugs will do what they should, help you. take care, thinking and saying prayers for you
heart
1 person hearted this
Patricia Nutt
By
Any chance that your referring doc could intervene for you and speak to this doc on what works best for you as a patient? Just keep tying that knot and hanging on!
heart
2 people hearted this
JoEllen Cron
By JoEllen Cron
I am thinking that you may need to go back to Dr. Brooks for your new rounds of chemo. It seems apparent that the staff at the Hallum's facility has decided you are a troublemaker and not worthy of a kind word. Do you really need to experience this at this point in your battle? Getting updates and info on your stats and progress seem extremely important to you; you are not ever going to get this from Hallum's group. These are just my thoughts as I read through your update. I would like to think it will change for you but realistically p'bly not. :(
heart
2 people hearted this
Virginia Towne
By
Have you thought about canibus for you stomach upset? I am taking it with some good results for nerve problems but I know it is used successfully for nausea.
heart
1 person hearted this