My Story
It is amazing to me that I have survived (and am thriving) for almost 20 years since my first diagnosis of 3C ovarian cancer in 2000, at age 58. As of June 2019, I have just begun my seventh recurrence. My treatments along the way have included 2 surgeries, clinical trials, PARP inhibitors, various chemo and radiation.
I was a high school choral director beginning a new and exciting year in September of 2000. I had scheduled a trip to Italy with my Chamber Singers for the spring of that year. It was my first such venture and a first for the school also.
Around the first of October, I noticed a considerable weight gain. I was constipated and felt very bloated. I thought it must be “middle age spread.” When I couldn’t reach down to tie my shoe, could only fit into a very loose-fitting dress, and looked about 5 month’s pregnant, I decided I better see my doctor.
She confirmed that I was constipated and bloated and put me on a regimen of Metamucil and mineral oil twice a day. After a week with no success and feeling miserable, the triage nurse made an appointment for me to see another doctor in the practice. By this time, I was also feeling a mass in my left groin, along with the extreme bloating. The new doctor did a rectal/pelvic exam, confirmed all my findings and ordered a CT scan. In addition, he made an appointment for me to see a gynecologic oncologist. That was the decision that kept me going for so long.
Next Steps
I visited the gynecologic-oncologist, had a pelvic exam and transvaginal ultrasound and received word that I had ovarian cancer. The next possible date for surgery was November 1, 2000. So began my journey with this doctor, the person who would be extremely significant on the journey I was beginning, one I never chose but which came to me. How I would respond was up to me.
In those 3 weeks, we had the wedding of my niece on October 21 and our children would be coming home (from college) for the wedding. We decided to wait until after the wedding to tell anyone. So, for an extremely difficult 2 weeks, I waited. On November 1, I was surrounded by the most amazing circle of love as I went into surgery. I knew that my life was not in my hands alone.
The Surgery
The 8-hour surgery included removal of my uterus, ovaries, the omentum and my appendix, as well as optimal tumor debulking. I was found to have 800cc. of ascites (fluid) and spread of the cancer which adhered to my stomach and colon. The pelvis and the fallopian tubes were filled with disease, as was the right diaphragm. My CA125 was 2055 and I was staged at 3C.
Upon request of the prognosis, my gynecologic oncologist told my family that I had a fifteen percent chance of living for five years. They didn’t tell me this news until sometime later.
I began six rounds of chemo (Taxol and Carboplatin). After the first round, the CA125 dropped to 702. After all six rounds, it dropped to 5!! Because of the great response to the chemo, my doctor told me that I would qualify for a national study and encouraged me to participate. It was a trial for the drug Ovarex. I would receive it by IV every three months for two years.
Ovarex was a monoclonal antibody made by special cells obtained from mice. It was to react with the CA125 to cause the body to produce an immune response to the CA125, thereby giving the recipient a longer life. I completed the study but, unfortunately, Ovarex has never been FDA-approved. I did, however, get seven years of being cancer-free. There’s no way to know how and whether the Ovarex contributed to that.
I continued on the lowest level of a Vivelle (estrogen replacement) patch because it seemed to decrease the intensity of migraines and it also eliminated hot flashes. With all those good things in place, I returned to full-time teaching.
A Long Road Ahead
In December of 2006, my CA 125 was creeping up. I got a CT scan which showed nothing definitive. By July of 2007, my CA125 was up to 88. The doctor ordered a PET scan which revealed three spots in the peritoneal area. I had no symptoms. By August, she suggested surgery, at which time three small masses were removed. One was on the aorta and one was embedded in the colon, and so four inches of colon were removed. Because I responded so well to Taxol and Carboplatin seven years previous, I went on six rounds of those drugs again.
As I finished my last day of treatment on January 17, 2008, my second granddaughter, Sophia, was born at the other end of the hospital!!
I retired from teaching at the end of that school year. I eliminated all Hormone Replacement Therapy, and the migraines never returned.
Two years later (December 2009), my CA125 was creeping up and an ultrasound revealed that again I had three new tumors. Rather than return to my original chemo drugs, I searched for a clinical trial and found one for which I qualified. It was a combination of Avastin and Temsirolimus. I was to receive a combination of the two drugs every week and could stay on the trial for as long as the tumors weren’t growing and/or I had no-to-minimal side effects. I was on the trial for six months and then was taken off because of mouth sores. They also said that the tumors hadn’t grown.
My Oncologist next suggested that I receive thirty-one days of radiation. I responded very well to that, and the tumors showed significant shrinkage.
The CA125 (every three months) gradually started increasing again and there were tumors showing up as I had PET scans every six months. The question was whether or not to treat when there were no symptoms. Then in June, 2012, just as I was to leave for Europe as a singer with the Basilica Choir, the CA125 dropped and the tumors showed shrinkage.
Since that time, I have had 5 more recurrences. The pattern shows they are getting closer together. My doctor initially told me to “get my life in order” and that has been what I aimed to do… to live each day as fully as possible, contributing to a loving and peaceful world by accepting what comes to me and loving those who are given to me.
The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.
