Jessica Mifflen can tell you that receiving a cancer diagnosis is shocking. An otherwise healthy adult in her early 40s, she found her world turned upside down by clear cell ovarian cancer. The active mom of two decided to treat her cancer aggressively, ultimately participating in a clinical trial.
She hopes that sharing her experience will ease fears that others may have about participating in a clinical trial.
“It’s not as scary as you would have thought, because they are so attentive because the stakes are so much higher — not just for you but for the doctors as well. They want their trial to be successful, which means they want their treatment to work for you safely,” she says.
Mifflen says, “I had a 10-centimeter cyst on my ovary. Though my OB-GYN told me there was a risk of cancer, she didn’t think it was cancerous, even though I had all kinds of symptoms, because I was only 41 years old and otherwise healthy.”
Despite her doctor being optimistic about the cyst on Mifflen’s ovary being benign (noncancerous), she underwent surgery to get the cyst removed.
Unfortunately, Mifflen’s surgery took an unexpected turn. When she woke up from the procedure, she learned that not only was the cyst cancerous, but it had ruptured in the process of removing it.
“I can’t be sure what stage of cancer I had initially because of the rupture,” she says. “I was probably a stage 1a, but in my next surgery shortly after, I found the cancer had spread. My new surgeon found the blood supply to the tumor and cleaned out the abdominal area to get rid of the cancer cells. While he was doing this, he also found epithelial cells all the way up to my rib cage.”
Clear cell ovarian cancer is a rare type of epithelial tumor that accounts for just 6 percent of all epithelial ovarian cancer.
Epithelial tumors form on the cells on the outside of the ovary. They can be benign, borderline, or, as in Mifflen’s situation, cancerous.
Because of what the doctors found during the second surgery, they recommended chemotherapy. Although people usually wait 3 weeks after surgery to allow for postoperative healing, Mifflen started just 12 days after surgery.
“I was on a combination of carboplatin and paclitaxel. These drugs are administered every 3 weeks,” she says.
Carboplatin is a type of platinum-containing compound commonly used for treating ovarian cancer.
It works by stopping or slowing the growth of cancer cells. Doctors can use it alone or in conjunction with other medications like paclitaxel.
According to the National Cancer Institute, paclitaxel works by slowing the rate of cell division. Doctors often choose it for advanced stages of ovarian cancer.
While these treatments may provide promising results to other people with ovarian cancer, Mifflen encountered obstacles through her treatment.
An allergy to paclitaxel and a low white cell count slowed down the course of her treatment, but she was able to finish it in February 2019.
After finishing chemotherapy, her blood work showed vast improvement.
One part of her blood test was for a cancer antigen, called CA-125. CA-125, often called a tumor marker, is used to monitor response to treatment for ovarian cancer. It measures the amount of protein in the bloodstream.
Prior to her second surgery, Mifflen’s blood test for CA-125 was 210. It quickly dropped after the surgery and chemo to 7.8. Typical CA-125 levels are
In March 2019, Mifflen received an all clear from her doctors. Her scans and bloodwork showed she was in remission. Her doctors continued to do scans and bloodwork every 3 months to ensure the cancer did not return.
Fifteen months after the cancer went into remission, Mifflen’s CA-125 started creeping upward. While it was still within the typical limits at her 15-month check, 3 months later it rose again, so she requested to be seen earlier.
At her next scan, Mifflen’s doctor found 3 new tumors, all around 2 centimeters. One had formed in the location of the original tumor, one on the surface under her belly button, and finally one on the right upper lobe of the lung.
These new tumors changed and limited treatment options. Mifflen’s doctors were unable to remove the tumors through surgery and informed her that this type of cancer doesn’t respond well to chemotherapy.
Even so, she had a glimmer of hope.
The doctor told Mifflen the cancer would respond better to immunotherapy, a type of treatment that would use her own immune system to battle the cancer cells, and began researching options to find a treatment plan.
Before Mifflen’s doctors could find a suitable treatment plan, she had to undergo testing on the tumors. That testing revealed PIK3CA gene mutations on the tumors.
Identifying these mutations provides doctors with more information when determining which medication or treatment plan will be most effective.
Shortly after undergoing testing, Mifflen’s trusted oncologist, Dr. Sid, recommended a phase 1 clinical trial led by Dr. Timothy Yap at M.D. Anderson in Houston, Texas.
This particular trial combined targeted therapy using a drug called copanlisib paired with immunotherapy using a drug called nivolumab.
Mifflen was eager to get started as quickly as possible.
After signing on for the trial, Mifflen received a call from one of the clinical trial nurses, who walked her through the process of getting started.
Due to issues with her insurance, though, it was difficult to get started in the timeframe Mifflen had in mind.
“Clinical trials take a lot of steps. It also takes a lot to get the insurance to clear. You have to get not just the trial approved but all the scans and biopsies approved as well. I had a lot of help handling it from the hospital’s financial department”
Despite the extra work getting her insurance company to cover the additional scans and biopsies, she started the trial just 15 days after her rediagnosis.
Participating in the trial was no less intensive than dealing with the insurance hurdles. Mifflen found the treatment schedule grueling.
During the first month of the trial, Mifflen received copanlisib intravenously on day 1, day 8, and day 15. In the second month, she received a mixture of nivolumab and copanlisib on day 1 as well as just copanlisib on day 8 and 15.
The plan was to continue this treatment as long as her body would tolerate it.
Aside from the days spent traveling from her home in Austin to Houston for treatment, Mifflen says she also underwent additional biopsies and bloodwork for her safety during the first 2 months of treatment.
She said, “It is a heavy load to carry in the first 2 months, you have all these additional biopsies. You feel a little bit like a lab rat even though the staff tries very hard not to make you feel that way. The nurses and all the people involved in the clinical treatment were amazing. It’s almost one-on-one. They rarely leave your bedside.”
After Mifflen’s first 2 months participating in the clinical trial, she got good news. The tumor in her lung shrunk by half, going down to 1 centimeter. The other 2 tumors each shrunk by 25 percent.
Both Mifflen and her doctors took this as a very positive sign. In general it takes longer for immunotherapy to work and her cancer was responding well. She continued to participate in the trial.
At the end of February 2021, Mifflen went in for testing required by the trial and was ready to start another round of treatment. Unfortunately, her cardiac marker (a reading of biomarkers in the blood that can indicate a possible issue with heart function) had skyrocketed into the thousands, and she was admitted to the cardiac unit for more testing.
Additional testing showed her heart was healthy, but issues with her thyroid had caused the elevated cardiac numbers.
Because of this, the doctors recommended Mifflen give her body a break from treatment.
She waited until the end of March before she participated in her next treatment through the trial. While she initially tolerated the treatment again, after a few more doses her cardiac markers went back up again.
At this point, the doctors removed her from the trial and sent her back to her oncologist.
Mifflen wants others to know that while taking a chance on the unknown may be scary, she never felt like she was being put in harm’s way.
She spoke very highly of the care and attentiveness of the staff, mentioning not only one-on-one attention, but also saying, “They have a very vested interest in your safety and the effectiveness of their trial. They don’t want anything to go wrong, so they are extra cautious.”
Mifflen points out there are a wide range of trials happening all over the country, so anyone looking to participate in one can find a trial that they’re comfortable with to participate in with their doctor’s help.
For those concerned about the financial aspects of participating in these trials, Mifflen has some advice.
“If you are concerned about participating in a trial due to finances, there are options to help. Ask the nurses and staff involved to refer you to resources. There is so much available to help.”
She notes that free flights may be offered to clinical trial participants and that some groups can help offset other costs.
Though she ultimately had to stop participating in the trial, Mifflen says, “I absolutely would recommend a clinical trial. it’s amazing to have the option not just to help someone in the future but to have it for yourself. I don’t have a lot of treatment options available and would participate in another one if I had the opportunity.”