People often tell Winona Williams that she’s brave, and she is. Ovarian cancer could easily become a dark cloud over her, shadowing every minute of every day.
Because she doesn’t let that happen, though – because she plays music and sings, mentors new teachers, and hops into the RV with her husband, Dale – people can’t help but be impressed and tell her she’s strong. They tell her she’s brave.
In turn, she smiles and replies that she’s just living her life.
“When you’re in the middle of it, it doesn’t seem strong,” she explains. “There’s a lot that’s out of my hands, but I do have a choice in whether I let ovarian cancer be the thing that defines me, or whether I live the life I want.”
It’s been a long and occasionally rough road following her January 2019 diagnosis. But since coming to the University of Colorado Cancer Center and working with a multidisciplinary team, Williams has shown tremendous response to an outside-the-box immunotherapy treatment and is feeling blessed with hope.
Winona Williams (front row, blue sweatshirt) with her family in the summer of 2021.
“I’m proud that at CU we’re investing millions of dollars in ovarian cancer research and are really at the leading edge of immunotherapy treatment for ovarian cancer,” says CU Cancer Center member Saketh Guntuaplli, MD, director of the CU Division of Gynecologic Oncology. “I think Winona is a direct beneficiary of this innovation, and of the multidisciplinary care that we’re able to give her.”
Adapting to the unexpected
Though a cancer diagnosis was an unwelcome surprise, Williams, 65, has nevertheless learned to roll with the unexpected.
She spent her career teaching music in the ever-changing environments of elementary schools in Cheyenne, Wyoming. Though she technically retired last year, she was persuaded to return part-time as a mentor to new teachers.
Winona Williams teaching virtually during the COVID-19 pandemic, dressed in Baroque costume to discuss Handel and Bach.
And almost 30 years ago, when she didn’t expect it and wasn’t looking, she met an airman named Dale at auditions for a community production of “The Sound of Music.” She showed up with her guitar and wearing a dirndl, and as far as first impressions go, that was indelible.
Williams was cast as the Baroness, Dale as a Nazi soldier, and they eventually embarked on a new role together as a family – both bringing their three children each to the mix “like the Brady Bunch,” Williams jokes. “Our youngest is even Cindy.”
Sure, there have been ups and downs, but also many happy adventures along the way. So, when Williams began experiencing some unexpected aches in autumn 2018, she visited a clinic in Cheyenne for an x-ray that showed her bones beginning to deform a little. Figuring it was a side effect of aging, she nevertheless embarked on a two-week photo safari to Kenya with her aunt – her first time out of the United States – in October 2018 and enjoyed the trip of a lifetime.
Winona Williams on photo safari in Kenya.
Still, her hips continued hurting, so she returned to the doctor in January 2019 “and that’s when the doctor felt something,” Williams recalls. “He said, ‘You’re not pregnant?’ I was 61 at the time, so I said, ‘No, I’m definitely not pregnant.’ I went in for an ultrasound and that’s when everything got crazy.”
She had a 25-centimeter tumor on her ovary and it was cancerous.
Several cycles of chemotherapy
Williams was immediately scheduled for a hysterectomy followed by chemotherapy treatment, which she got through with minimal side effects or interruptions to her teaching schedule. For almost a year following treatment her cancer was in remission, but because ovarian cancer is often caught in late stages it recurs in about 80% of women “and mine came back,” Williams says.
As a lifelong learner whose impulse is to dive into research and figure things out, Williams knew that a recurrence was bad news. She’d had a friend who received treatment at the CU Cancer Center and spoke highly of her experience, so Williams decided to make the two-hour drive from Cheyenne. She began working with Guntupalli and a multidisciplinary CU Cancer Center team to figure out what the best next steps would be.
She first had another cycle of chemotherapy, this time experiencing a strange allergic reaction that resulted in a three-day stay at a Fort Collins hospital during the height of the COVID-19 pandemic. However, the chemotherapy had its intended effect and until February 2022 Williams was in a state of maintenance – meeting with her care team at regular intervals to make sure her tumors hadn’t begun growing again.
In February 2022, though “my numbers were starting to go back up and the CT scan showed the cancer had metastasized to my diaphragm, which is a big deal for a music teacher,” Williams says. “Then out of the blue Dr. Guntupalli says, ‘We’re going to try this new therapy.’”
Outside-the-box treatment
“We run a genetics-based practice where we really look at the individual characteristics of a patient’s tumor rather than looking at it broadly,” Guntupalli explains. “If you look at treating cancer like a dartboard, you want to have clear vision and an unobstructed view of the bullseye. Unfortunately, a lot of times we’re looking at it blindfolded and throwing things at cancer that will probably work. With the advanced genetic testing we do right here on the Anschutz campus, we can get very specific information about the cancer that really lets us target treatment.”
Williams’ genetic testing revealed that her tumor expressed PD-L1, a protein that can slow the body’s immune responses. An immunotherapy drug called pembrolizumab has been discovered to block PD-L1 on the surface of T cells, allowing T cells to find and kill cancer cells. However, not much research had studied pembrolizumab as a treatment for ovarian cancer as it is more commonly used in non-small cell lung cancer and melanoma.
“It was a little outside the box, and using it to treat ovarian cancer was going to be an off-label indication for sure, but it had been done a few times and had shown some good results,” Guntupalli says. “Because Winona’s cancer had spread and was causing fluid build-up in her lungs, we knew we needed to be aggressive.”
In the almost six months Williams has taken pembrolizumab, she has experienced a complete response. “It’s quite miraculous what has happened,” Guntupalli says. “It really opens up a lot of questions. What else about her tumor made it so responsive to immunotherapy? She’s had the most miraculous response and we need to figure out why.”
“Grateful to be living my life”
Because Williams’ response to immunotherapy was so complete, she has been able to transition from treatment every three weeks to treatment every six weeks, and will continue to have immunotherapy treatment for two years total.
“The other amazing thing is she responded like this after just two cycles of pembrolizumab, so when we figure out why that’s the case, what we learn from Winona may have the potential to benefit other patients with ovarian cancer,” Guntupalli says.
In the meantime, “Dr. Guntupalli has been so wonderful and his advice has been, ‘Live your life,’” Williams says.
Winona and Dale Williams are enjoying traveling around the western United States.
So, that’s what she’s doing. She and Dale share 10 grandchildren, with whom she enjoys spending time, and she’s enjoying mentoring new music teachers. Whenever they can, she and Dale take off in the RV to explore the southwest “and someday we’d definitely like to get overseas and visit the Europe of our ancestors – England, Wales, Ireland, France, and Germany,” she says.
Of course there have been and continue to be moments where it feels overwhelming, but in those times Williams draws deep comfort from the song “Come to My Garden” from the musical “The Secret Garden”: “Lift me up and lead me to the garden where life begins anew.”
“Maybe it’s just because I’m from Wyoming and we’re pretty practical up here,” Williams says with a laugh, “but I just try to focus on how amazing it is that I get to be here, that scientists can learn from my case and hopefully help the next person down the line. I’m so grateful to be living my life every day.”
