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A patient with ovarian cancer describes how she enrolled in a clinical trial, and how it has given her a renewed sense of hope that she may find a successful treatment option.
For those who follow my cancer journey, I want to update you on what is going on in my life. For those who are unfamiliar, I have ovarian cancer. I was diagnosed in 2013 and have been through three surgeries, four rounds of chemo, two batches of radiation, one maintenance drug, and now, I am in a clinical trial.
While I am not at a Hail-Mary place, in my opinion, I have been trying to be the best advocate for myself for the whole duration of my illness. I was fortunate to be assigned to a brilliant and wonderful oncologist, Dr. Shruti Trehan, and met her the day after I woke up after my first surgery.
For me, it was an instant connection to this person who I respect and believe she always has my back. This includes referring me to other oncologists who have access to more treatment choices.
As my tumor marker numbers (CA125) would increase, together we would come up with a plan to tackle the change. Sometimes that was sending me to the Cleveland Clinic for a consult and eventual surgeries. At one point, we tried a maintenance drug which probably kept the cancer at bay for a year and a half.
My cancer seemed to show up in my lymph nodes, so she again suggested the Cleveland Clinic and I had Stereotactic Body Radiation Therapy (SBRT). This worked on the nodes that were present and destroyed them. More nodes showed up, so more radiation and chemotherapy were ordered. Then the numbers went up again, yet they were still in the normal range of 1 to 35. What was next in my fight?
My oncologist referred me to The James Cancer Center in Columbus on The Ohio State University campus. Her words to me were that The James has a robust program and hopefully, we may find a trial to fit my needs before my numbers become more of a concern.
Meeting a New Oncologist
My husband and I went down to meet with Dr. Casey M. Cosgrove, a gynecologic oncologist at The James, in the beginning of November, and after meeting with a nurse and resident who confirmed my history, we were ushered in to see the doctor. These doctors are fighting on the forefront of amazing possibilities. Dr. Cosgrove was equally brilliant and knowledgeable and was genuinely interested in finding something that may work for me. His positivity was exhilarating and exciting which gave my husband and me hope.
Dr. Cosgrove was able to find two trials that might work for me. The next step was to see if I officially would qualify and meet the requirements of the trial protocol. Even then, he shared that if I did not qualify, more trials are coming down the path every day. So the qualification process began for me!
First, a trial coordinator discussed both trials with us. The packet of information on each trial was lengthy and while not difficult to understand, there were many hoops to jump and boxes to check off to even get in the trials.
The first trial would require taking a combination of two drugs together weekly. There was one constant drug, and then patients would receive either the new drug or a placebo. If the patient received the placebo, I was informed that they were still getting a standard-of-care chemotherapy to fight the disease.
To see if I qualified, I signed papers to have the Cleveland Clinic send a piece of my tumor from their tumor bank that they removed during a previous surgery. If the slides of the tumor met the criteria they needed for the trial, I would qualify.
Update on this trial: I did qualify, but it took over a month to run the tests on the tumor. Just last week, the trial coordinator called me to let me know that this trial did not see the results that they had hoped for and that they were closing the trial.
On to the Next One
The second trial that I had potentially qualified for was discussed with me, and it was one that seemed to be more manageable as once the trial started, I would have to go to Columbus every three weeks instead of once a week.
To initially qualify, I needed a specific number they were looking for in my bloodwork. I signed paperwork to have my blood drawn and they would let me know as soon as they could.
My husband and I left there with happiness and renewed hope. We decided on that day that we would celebrate every visit to Columbus with a fine dining experience, making new memories and eating well. If you know anything about Columbus, or any large city, there are always good places to eat. We went to one of our favorite places in German Village. It was amazing and delicious!
In about two weeks, I got the call that the bloodwork came back and that I had met the criteria on the blood test. Even though I had qualified for the second trial, I would need to have many more tests done. My husband, family and friends were so excited for me as this new possibility may be the ticket to a longer life.
Let the Testing Begin
Then the testing began … and the wait. The first day of December was testing day and it was a long day. I met with the trial coordinator to get the specifics of the testing as well as my rigorous schedule of tests, bloodwork (10 vials of blood), EEG, EKG, nurse practitioner examination and CT scan. Of course, these tests were administered through at least four different facilities. My dear friend went with me, and we celebrated when it was all done with a fine dining experience. Again, yummy and amazing.
Throughout the next couple of weeks, I continued to hear from the trial coordinator updating me with results from the rigorous tests. Finally, on December 17, I had my visit with Dr. Cosgrove saying that I have in fact officially qualified for the trial. We had a bit of a glitch with the EKG as it needed to be done again because they needed three copies but originally took only one. So, I had the EKG and was off to get started on the trial.
This trial involves being given a vaccine along with Keytruda (pembrolizumab). In layman’s terms, the vaccine ramps up my T cells while the Keytruda removes the protection the cancer cell carries. If it works, my own immune system will fight the cancer. I remain hopeful.
I was to receive the vaccine below the skin layer, not in muscular tissue, for the first three weeks. I would receive six shots total — arms, legs and abdomen. The injection sites look like mosquito bites. I was prescribed a cortisone cream to use if the vaccine areas became irritated.
I have had to use the cream minimally. On the fourth visit, I received the Keytruda dose after the vaccine shots. I have had very little side effects and for that I am grateful. Every other cycle, I am supposed to receive CT scans and other tests. That will be next week.
Everything Was Worth It
There were a lot of boxes to check off for this trial. It was worth the time, testing, effort and chance to get into this trial. I am fortunate to be rather healthy for this trial, so a trial like this may not work for everyone. But there are trials out there that may work for you. Plus, I may be one of the people that help design a new protocol for ovarian cancer treatment. I may be part of the solution!
Again, please be your own best advocate. Ask questions and seek people that are willing to fight both for you and with you. I continue to feel blessed to have found the best physicians to help me on this journey. I have the best husband, family and friends who support me and love me.
My resolution this year was to fight the fight the best I can, and I am. Maybe, just maybe, I will help other ovarian cancer fighters survive! I hope so ….
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