UnTEAL There’s A Cure, Have Faith in the Fight
Diagnosed with stage 4 ovarian cancer three years ago, Kathy Jennings was thrown a lifeline when she came to Duke Cancer Center
It’s October 30, 2019. The pre-pandemic “before times” in the expansive fourth-floor waiting room of the Oncology Treatment Center, Duke Cancer Center, Durham.
Volunteers in Duke blue vests are handing out coffee and making small talk with patients waiting to be called for their next IV infusion of cancer-fighting drugs — treatments they hope will ultimately prolong their life, if not cure them.
Kathy Jennings, 59, is there to support a friend at her first chemotherapy appointment.
It’s been almost two years to the day since Jennings’ final chemotherapy treatment for ovarian cancer.
“It was rough having chemo every week and I forget how harsh the side effects are until I begin helping a friend with their journey,” says the vibrant cancer survivor, agreeing to be interviewed about her own journey before she joins her friend in the treatment room.
A Full Plate
Jennings is a nurturer by nature. She’s always there for her friends and family and also finds community in helping strangers cope with the same challenges she has faced. She founded an infertility support group, “Women of Hope,” and an adoption support group, “Amazing Families,” many years ago. And, most recently she’s used her personal Facebook page for ovarian cancer education and advocacy.
Jennings lives just 10 minutes down the road from Duke Cancer Center with her husband Spencer, a civil engineer with the N.C. Department of Transportation; their daughter Kaitlin, 22, a Catawba College senior pursuing a double music major in Worship Arts and Vocal Pedagogy; and their son Roman, a 20- year-old story consultant and videographer helping to develop local non-profits and businesses. Jennings’ mother Muriel Coffey, an active and healthy 97-year-old, also lives with them.
A stay-at-home mom, Jennings has her hands full managing a multi-generational household.
Cooking nearly every day from scratch for her family — from a pot of chili to shrimp coconut curry — is one of her favorite ways of expressing love, of assuring her family she’s there for them. She always makes enough for leftovers or to feed last-minute guests.
When Jennings was suddenly faced with stage 4 epithelial ovarian cancer in June 2017, the family’s caregiver-in-chief was bereft.
Jennings’ ovarian cancer had gone undetected for at least six months before diagnosis. In January 2017, she saw her primary care doctor for mild lower abdominal pain and constipation. A UTI was ruled out as the source. Over the next several weeks, she would see two different doctors and undergo a series of tests, including two physical exams, four ultrasounds and an MRI. Nothing alarming was found. One of the scans was incorrectly read. It wasn’t until she was four months into pelvic physical therapy and had started colonic massage that she discovered, on her own, “a definite lump” to the left of her uterus. A follow-up ultrasound (her fifth) by her doctors plus a CT scan at Duke of her abdomen showed cancer everywhere.
“I was in the best shape ever compared to my teens and twenties. It was a complete shock,” said Jennings, who had a side gig as a Beachbody fitness coach and was eating healthy and working out at the time. “What’s amazing is that when the cancer was discovered, I was already at stage 4.”
Per the American Cancer Society, up to 25% of ovarian cancer diagnoses are due to the patient having a family cancer syndrome, which means they’ve inherited particular mutations in particular genes that drive not only the development of ovarian cancer, but also breast and colorectal cancers. Jennings had no family history of ovarian cancer.
Other factors that increase a woman’s chance of getting ovarian cancer include: getting older (most ovarian cancers develop after menopause); being overweight or obese; having their first child after age 35 or never having carried a pregnancy to term; taking hormone therapy after menopause; having a family history of Fallopian tube cancer, breast cancer, and/or colorectal cancer; and having a personal history of breast cancer.
While Jennings was of menopause age, she hadn’t yet gone through “the change.” However, due to infertility, she’d never carried a pregnancy, which may have been her biggest risk factor.
A Silent Killer
Ovarian cancer is often called the silent killer because it spreads fairly quietly before causing painful symptoms. It can be easily missed.
When it does cause symptoms — most commonly bloating; pelvic and/or abdominal pain; feeling full quickly, upset stomach, or trouble eating; having to urinate frequently; extreme tiredness; difficulty having bowel movements; and abdominal swelling — a range of benign conditions may be initially suspected.
Because ovarian cancers frequently cause these non-specific symptoms, oncologists advise that women should seek prompt medical attention if these symptoms last more than a few weeks.
Unfortunately, early discovery represents only 20% of all cases. By the time most women are diagnosed with ovarian cancer, as in Jennings’ case, it’s already advanced through the abdominal cavity.
When Jennings’ CT scan showed clear evidence of cancer, she was immediately referred to gynecologic oncologist Angeles Alvarez Secord, MD, MHS, at Duke Cancer Institute.
When the two first met to discuss her options, in June 2017, Jennings already knew what she was up against. She’d done her homework. She’d read the sobering statistic that even with treatment, only 29% of stage 3 or 4 ovarian cancer patients live longer than five years after diagnosis. She aimed to be in that 29%. (The five-year survival rate for those diagnosed early, meanwhile, is 94%.)
Jennings had learned that a combination of cancer-reducing surgery and chemotherapy was standard-of-care treatment for her cancer type. Limiting treatment to palliative care, aimed solely at improving her comfort level, was also an option.
But Secord, who also serves as associate director, clinical research, for the Gynecologic Cancer group at DCI, surprised her by putting an additional option on the table — a clinical trial.
“Dr. Angel,” as Jennings’ friend Rebecca Gordon (currently under Secord’s care for stage 3c Ovarian Cancer) would later call the oncologist, had thrown her a lifeline.
Secord suggested Jennings might be a good candidate for an early clinical trial of an immunotherapy she and Stephanie Gaillard, MD, PhD (now with Johns Hopkins Medicine) were leading: A Pilot Study Investigating the Effect of Pembrolizumab on the Tumoral Immunoprofile of Gynecologic Cancers of Müllerian Origin, also referred to as the “Pembro Window Study.”
The primary objective of the study was to assess the feasibility and safety of using pembrolizumab in women with newly diagnosed gynecologic cancers of müllerian origin (also known as epithelial cancers). These kinds of cancers, which include ovarian, endometrial, Fallopian tube, and primary peritoneal cancers, account for more than 70,000 new diagnoses and more than 22,000 deaths per year in the U.S. alone.
In the first part of the trial, pembrolizumab would be administered (200 mg via IV) two weeks before cancer-reducing surgery. The primary goals of the study were to assess the change in tumor immune cells in the tumor after the pembrolizumab treatment and to assess safety and feasibility of this approach.
Per Secord, “There was also the hope that pembrolizumab might kickstart the body’s immune response against the cancer before the platinum/taxane chemotherapy was administered and that that approach could perhaps blunt the chance for recurrence.”
Jennings qualified and enrolled. She was well aware of the experimental nature of a pilot study. This wasn’t a late-stage trial of a treatment protocol well on its way to FDA approval. She was prepared for the possibility of adverse side-effects.
Pembrolizumab, a PD-1 checkpoint inhibitor, had shown some success in clinical trials for various cancers and is FDA approved for multiple cancers including certain types of melanoma and lung cancer. However, little is known about whether or how to combine chemotherapy, targeted therapy and immunotherapy (like pembrolizumab) for maximal benefit in ovarian cancer.
The level of CA-125 protein circulating in Jennings’ blood was measured at the outset. Many women with ovarian cancer exhibit above normal levels of the protein at diagnosis. Jennings’ was 436. Normal is below 35. Her levels would be tested throughout treatment to see if her numbers went down in response.
Jennings proceeded with the infusion that summer. Then gynecologic cancer surgeon Paula Lee, MD, MPH, removed her ovaries, uterus, part of her colon, part of her small intestine, gallbladder, appendix, spleen, and spots on the surface of her liver and stomach wall. An anticipated four to five-hour surgery took eight hours to remove all of the visible cancer.
When Jennings’ CA-125 level was measured again after this debulking surgery and prior to chemotherapy, it had dropped more than 200 points to 230. It’s normal for the CA-125 level to decrease after surgery.
In July 2017, Jennings began 18 straight weeks of chemotherapy. Often, cancer patients will get the drug one week, then there’s two weeks to recover. And the cycle starts again. In Jennings’ case, she received a chemotherapy infusion every week; carboplatin and paclitaxel in the first week, then paclitaxil each week for two weeks. She repeated this cycle for a total of six cycles and completed treatment on October 31, 2017.
After just her first cycle of chemotherapy, Jennings’ CA-125 level had already dropped to 21. By the time she completed all six cycles, it was down to 10.
While Jennings was in treatment, family and friends quickly stepped in and rallied around the Jennings’ family — providing weekly meals and rides to chemo.
“It’s not for the faint of heart,” said Jennings, who stopped treatment two weeks early, on the advice of Secord, to prevent worsening and possibly permanent neuropathy. “I would just be crawling up the stairs because I was so weak. A couple times Spencer had to carry me into bed.”
Jennings’ December 2017 scans revealed no evidence of disease.
Because she’d improved with treatment, she qualified to proceed with pembrolizumab infusions every three weeks for a year as maintenance therapy.
Jennings was on the drug for all of 2018 — experiencing side-effects of extreme fatigue, joint pain and severe diarrhea.
“I was miserable for that whole year,” she said, “but I persevered because I knew this trial treatment could possibly save my life!”
Throughout 2019, with still no evidence of disease, and no longer on any medication besides vitamins, Jennings worked on getting back into fighting shape.
“It would be such an amazing miracle and scientific breakthrough if pembrolizumab proves to offer significant cure and treatment for those with advanced disease,” said Jennings. “I really do feel thankful! One thing I have is a really strong faith in God. We’re all going to die. We just have a different timeline. But I believe in taking today and doing my best. I want to be around a long time for my family and friends! My husband is praying that we will have many healthy years together as we look toward retirement in the next five years so we can enjoy family, fun times and have more time to serve others together as a couple.”
Postscript 2020: N.E.D.
Jennings still faces significant joint pain, intermittent GI symptoms and fatigue — life-long side-effects of her cancer treatment — but she continues to believe that because it’s given her more years of life, it was well worth it.
“Whenever I feel sick, I just tell my family, “Sorry I have to run to the bathroom, but at least I’m still alive,”” said Jennings. “I tease them all the time.”
Largely confined to her house since late March, Jennings has used the pandemic times to refocus on physical fitness, through good nutrition and daily workouts (cardio and weights) designed to minimize treatment side-effects, boost her energy, and improve her health. She also enjoys running around the yard and playing catch with her dog Cody, a 52-pound standard poodle.
By mid-July, Jennings had worked her way back to being a part-time Beachbody coach; motivating her friends to stay healthy and fit.
“We are posting quick check-ins to my online group - like “Day 6 is done & feeling great!” Or “oops - pound cake last night - today is a new day! 🤣💪🏼” she texted.
On July 9, 2020, the results of Secord’s pembrolizumab window trial were released.
“The results from the study did show that several of the tumor specimens demonstrated either an increase in PD-LI expression or a switch from negative to positive immune cells at the tumor interface,” said Secord.
Translation — this may mean there was an immune response.
“Immunotherapy may still be a benefit in select patients, but we don’t know yet,” said Secord. “We are looking closely at the tumor and blood specimens from patients on our trials with immunotherapies to better understand what is happening in the tumor and the immune system response.”
The majority of women with advanced stage ovarian cancer at diagnosis will experience relapse.
Of the 15 patients enrolled in the trial, including 13 newly diagnosed ovarian cancer patients and two newly diagnosed endometrial carcinoma patients, Jennings is the only patient with high grade advanced ovarian cancer that hasn’t recurred.
“Unfortunately, relapsed disease is incurable and women ultimately die of their disease despite maximal efforts at cancer control using subsequent chemotherapy or targeted agents,” Secord said, allowing that there are always exceptions. “There has been significant interest in incorporating immune checkpoint therapies in the treatment of gynecologic malignancies, especially given the durable remissions associated with these therapies in the treatment of melanoma and early indications of some durable responses in women with recurrent ovarian cancer. Ms. Jennings has had a better than expected outcome at this point, but we can’t necessarily attribute that to the pembrolizumab she received.”
Secord said the results of an international phase III study of pembrolizumab added to paclitaxel and carboplatin in advanced ovarian cancer have not been released as the trial is ongoing. However, she noted that a recent phase III trial, the IMagyn050 study demonstrated that adding atezolizumab, a different type of immunotherapy, to paclitaxel and carboplatin did not improve progression-free survival (the length of time the patient lived with the cancer without it getting worse) for women with newly-diagnosed advanced ovarian cancer.
Fighting in Faith
Jennings’ CA-125 level has creeped upwards a few points since last October, though it remains well within the normal range. When the CA-125 is over 35 on at least two occasions, it may mean the cancer has spread or recurred and often a CT scan is obtained.
A July 15, 2020 CT scan showed no evidence of disease (NED).
If Jennings’ cancer does recur, there are still several different treatment options available, including additional clinical trials, said Secord.
“I am so thankful that God, working through the expertise of both Dr. Lee and Dr. Secord, has given me two years and nine months with no visible evidence of a recurrence of Stage 4 Ovarian Cancer,” wrote Jennings as she prepared to embark on a relaxing beach getaway in August — the first vacation with her husband since 2016. “I never take this gift of time for granted!!”
“Kathy Jennings is very enthusiastic about the success of her treatment. Her story is impactful and inspiring,” said Secord.
Duke Cancer Institute ovarian cancer researchers in the Gynecologic Cancer group continue to work toward better treatments and investigate ways to screen — with the aim of improving survival and quality-of-life. Show your support for this continuing research by walking or running in your neighborhood in solidarity with DCI GynOnc clinicians and researchers, survivors and their loved ones at the 18th Annual Gail Parkins Memorial Ovarian Cancer Walk & 5K Run . The fundraiser will take place as a virtual-only event this year to be held from September 12 through 26, 2020. Kathy’s team is “Fighting in Faith.”
Tune in on September 26 for An Educational Symposium. [Zoom details will be provided to all registrants. For those who are not registered and wished to see the speakers' talks, we hope to make a recording available to the public a few days after the event.]
9:30 a.m. Andrew Berchuck, MD, Director, Duke Division of Gynecologic Oncology
Topic: Ovarian cancer screening, prevention and genetic testing.
10 a.m. Angeles Secord, MD, Director, Duke Gynecologic Cancer Clinical Trials
Topic: Use of PARP inhibitor drugs in treatment of ovarian cancer.
Unlike in breast cancer, there are no reliable screening tests or exams to detect ovarian cancer early in women of average risk with no symptoms. (There’s no mammogram equivalent.) Per the United States Preventive Services Taskforce (USPSTF), any benefit to screening these women for ovarian cancer with diagnostic tools are outweighed by the harms, including potential false-positive results as well as unnecessary testing and diagnostic surgery.
In studies where transvaginal ultrasound, a diagnostic tool, was used to screen for ovarian cancer, most of the masses turned out not to be cancer upon further examination. Research measuring the level of CA-125 (a protein) in the blood — albeit a valuable test for helping guide treatment in ovarian cancer patients — hasn’t yet been found to be an effective screening method for asymptomatic women either.
High CA-125 levels in the absence of other symptoms is more often indicative of common conditions such as endometriosis and pelvic inflammatory disease than a sign of the presence of cancer.
Further, there’s been no “adequate evidence” that screening with ultrasounds or CA-125 tests reduce ovarian cancer mortality. [These screening tests may, however, be recommended for women who are at high risk for ovarian cancer, such as those with BRCA gene mutations. Doctors may also discuss preventive surgeries to remove the ovaries and Fallopian tubes for these patients.]
Gynecologic oncologist Angeles Alvarez Secord, MD, MHS, emphasizes that it’s important for women to be aware of the symptoms of ovarian cancer.
Secord advises that while these cancers frequently cause non-specific symptoms that can be hard to identify, women should seek prompt medical attention if any of these common symptoms (bloating; pelvic and/or abdominal pain; feeling full quickly, upset stomach, or trouble eating; having to urinate frequently; extreme tiredness; difficulty having bowels movements; and abdominal swelling) last more than a few weeks.