The stem cells came all the way from Poland via military plane, a special delivery prompted by one of a hundred desperate phone calls, emails and social posts Janet Terpko made on behalf of her husband Jared Weeks, diagnosed with acute myeloid leukemia, or AML, just as the coronavirus emerged in China in the fall of 2019.
Weeks, 43, had found a perfect match in Europe and the Spokane, Wash., couple was assured the new virus wouldn’t be an issue. He started his conditioning: the elimination of his diseased bone marrow — and with it, his immune system — with chemotherapy and full body irradiation.
Then COVID-19 slammed the border shut: The precious donor cells suddenly weren’t coming.
“I talked to the U.S. consulate in Poland. I talked to Sen. Maria Cantwell’s office. I called whoever would listen to me,” said Terpko, who acts as Weeks’ caregiver. “That’s what you do. I’ve never been so persistent in my life — and it worked.”
Word trickled up, somebody tapped the military, and the cells finally arrived safely in Seattle on St. Patrick’s Day, March 17. Nearly dead from the effects of AML and the grueling conditioning, Weeks started the infusion that day, through the Fred Hutchinson Cancer Research Center bone marrow transplant program at Seattle Cancer Care Alliance.
The family lived in Seattle until July, when they returned home to what they hoped would be normalcy. Seven months later, Weeks is doing phenomenally well, transplant-wise. But he’s more anxious than ever. Not because of his cancer, but because of COVID-19, his new and fragile immune system — and his community’s failure to take the pandemic seriously enough to keep him safe.
“People don’t wear masks here,” Terpko said. “We can’t go anywhere. We can’t do anything. It’s very scary.”
From shuttered clinical trials to scary waiting rooms, delayed screenings to the inability to give or get a simple comforting hug, COVID-19 has had a profound effect on the world of cancer patients and those who endeavor to keep them alive. We checked in with a handful of patients and providers to see how they’re navigating the new landscape and what concerns them most as they look to the future.
“Going through chemotherapy and then a stem cell transplant during the COVID-19 outbreak has been the hardest thing I have ever endured,” Weeks said via email. “My life was — and still is — being determined by how serious people take COVID-19 and the policies put in place by clinics, hospitals and other places I cannot avoid.”
Learn more about how patients and care providers have found ways to continue cancer care and research in unprecedented times:
Like many immunocompromised cancer patients fresh out of transplant — or in active treatment for early or metastatic cancer — Weeks is seen a lot by providers. He goes in weekly for blood work and oncology visits and sees his primary care doctor on a biweekly basis.
And he worries every time.
“He will not even sit in a waiting room because people won’t mask up,” Terpko said. “He stands up in a corner. He’s not taking any chances. You can’t.”
She and her husband, along with their three teenage sons and their 3-year-old daughter, take numerous precautions to safeguard Weeks’ life. Neither parent works anymore. Their social life is mostly virtual — with brief play time in the yard as weather, and energy, allow. Although they have family nearby, some members choose not to wear masks or say they don’t believe in COVID-19’s deadliness, leading Terpko and Weeks to keep to themselves.
“It blows our mind, but we know the only people we can control is us, so nobody has set foot in our home since we’ve been back,” Terpko said. “We don’t allow anybody inside.”
The Spokane family is hardly alone. A late summer survey of 4,000 patients (more than a quarter with cancer) by the American Society of Clinical Oncology, or ASCO, found 81% of patients had limited their contact with others over fear of contracting COVID-19.
And six in 10 with active cancer said they’d had to make many sacrifices in their daily life because of their heightened risk of being infected with the virus. Read more about the risk of infection for transplant patients.
Steve Schroeder, 61, also of Spokane, lost a longtime family friend to the Skagit Valley, Wash., choir practice that was among the initial superspreader events in the U.S. He takes COVID-19 very seriously.
Ditto for his cancer. Diagnosed with an extremely rare cancer known as extramammary Paget’s disease, or EMPD, five years ago, the retired salesman and full-time patient advocate manages his cancer through surveillance and surgery.
Like Weeks, he must see a doctor regularly. Like Weeks, he finds it nerve-wracking.
“Going into enclosed spaces is scary,” Schroeder said. “I’ve done telehealth but you can’t do that for scans and lab work. You just hope the people aren’t out partying the night before. It adds to the stress level, but it’s some of the risk I have to take.”
Following multiple surgeries, Schroeder keeps a careful watch on his cancer. Normally, this means flying to Memorial Sloan Kettering Cancer Center in New York City twice a year for surveillance with a non-invasive handheld device that uses reflectance confocal microscopy.
“It allows real-time viewing of cells, but the challenge is not every hospital has one,” he said. Unfortunately, the new coronavirus has made travel — and his cancer surveillance — dicey. “Without a doubt, this is putting my health at risk,” he said.
Schroeder has so far missed two scheduled scans and he now worries about progression — as well as what may be in store when he finally is seen. Twice before, the cellular microscopy procedure has spotted budding cancer cells. When EMPD cells are caught and killed at this nascent stage, Schroeder can avoid “dozens or hundreds of biopsies all over the groin area.”
But he has to weigh a potential cancer recurrence against traveling to a COVID-19 hotspot.
“At some point, I’ll have no choice and will have to make the trek to New York but it won’t be easy,” he said. “I’ll have to take a flight, an Uber, stay at a hotel — all those things are risks. At the same time, there’s the cancer risk. I’m going into more than a year since a follow-up and that’s not a wise decision with my cancer.
“Without these visits, I’m playing cancer roulette,” he said.
In the ASCO poll, two-thirds of those with cancer had similarly put their surveillance on hold. And 63% said they were stressed out about it. Nearly half the patients with active cancer surveyed by ASCO said the coronavirus pandemic had had a negative impact on their mental health.
Sadly, more COVID-19 and cancer-related collateral damage may still be ahead. And not just for people whose diagnosed cancers have progressed.
Dr. Rachel Issaka, a gastroenterologist and assistant professor at the Hutch and the University of Washington, said she’s concerned about those who’ve postponed preventive screenings.
“When COVID-19 hit, endoscopy centers — where colonoscopies are performed and imaging centers where mammograms are completed — closed,” she said. “Outpatient cancer screenings came to a screeching halt. Early data showed colonoscopies dropped 90% from March 2019 to March 2020. During this same time, there were 32% fewer colorectal cancers diagnosed, because screening was not happening.”
Issaka said an estimated additional 4,000 people are projected to die of colorectal cancer over the next decade “because of losses to screening.”
“And those were early predictions,” she said. “The longer COVID-19 persists, the more likely these numbers will increase.”
A research letter published in JAMA Network Open in August found that in one year, the weekly diagnosis rate for six cancers — lung, breast, pancreatic, colorectal, esophageal and gastric cancer — fell by nearly 50% in the U.S.
But cancer hasn’t stopped because of COVID-19. Just the screenings. Dr. Ned Sharpless, head of the National Cancer Institute, put it this way in an editorial in Science: "Cancers being missed now will still come to light eventually, but at a later stage and with worse prognoses."
Fred Hutch/SCCA/UW physician-scientist Dr. Hannah Linden
Cancer clinical trials have also stalled, delaying the development of new treatments and therapies; others have been retooled to include innovations like remote consent forms and assessments, streamlined protocols and telemedicine.
Elizabeth Viggiano, a 58-year-old nurse educator from Portland, Oregon, was enrolled in the DESTINY trial for her metastatic breast cancer when the pandemic hit.
“When it started, there were regular visits with my provider, EKGs every six weeks, survey forms you had to fill out,” she said. “I would meet in person with the trial navigator and with the provider and to get my labs drawn.”
After COVID-19, the trial dropped the EKG requirement, the blood draws were moved from the clinic’s lab to the infusion floor and her in-person visits stopped.
“The visits went just to phone, not even video,” she said. “And it didn’t feel the same. I definitely feel that the care was impacted because of that distance with COVID.”
Other changes were for the better.
“You couldn’t have any visitors or support people so there were fewer people walking around on the infusion floor. I felt safer,” she said. “That part was great.”
Severe side effects forced her to drop out so she’s currently scrambling to find another trial, another drug, to extend her life. Unfortunately, the best option seems to be in Florida, far away and with significantly higher rates of COVID-19, adding risk and more stress.
“I’m negotiating with them now to get my pre-screening done here,” she said. “I don’t want to go to Florida and then have them say, ‘You don’t qualify.’”
Dr. Marco Mielcarek, medical director of the Adult Blood and Marrow Transplant Program at Fred Hutch and SCCA, said remote consultations have worked very well for bone marrow transplant candidates during COVID-19.
“That was one of the first things we implemented,” he said. “We converted our face-to-face visits to telemedicine visits and we continue to do this. Patients no longer have to spend hours on a flight to Seattle.”
It’s worked so well, they’ll continue to use it.
“Once COVID is behind us, we’ll continue to deliver care via telemedicine,” he said. “It’s seems to be a broadly embraced care concept.”
As patients and health care providers continue to adapt to COVID-19, the landscape may become less scary. And less lonely: another sad consequence of the coronavirus.
“What’s crazy is being in the hospital with no family able to be with you even when you have surgery,” Bridgette Hempstead, a metastatic breast cancer patient from Seattle, recently tweeted. “It was horrible,” she said in a follow-up interview. “They wouldn’t allow any of my children in to see me. It was very isolating and scary — especially as a Black person. I felt very vulnerable.”
Fred Hutch’s health economics group, the Hutchinson Institute for Cancer Outcomes Research, is gathering data on how COVID-19 has affected the region’s underserved cancer patients.
“We plan to talk to cancer patients directly, especially African Americans, Latinx people and people in rural areas, to see what their experiences have been during the pandemic,” said Dr. Scott Ramsey, HICOR director and principal investigator of the new study. “We want to know if they’re delaying care or not receiving care or if new approaches to care, like telemedicine, are affecting their experience.”
If you are interested in sharing your story, please send the team an email.
For now, though, cancer patients are doing their best to deal with the anxiety and uncertainty. Researchers and care providers are anxious, too — about the outcomes for their patients and the general public, the quality of their care in this new era of virtual oncology, and the future of clinical studies.
Dr. Hannah Linden, a clinical researcher and breast cancer oncologist with Fred Hutch, UW, and SCCA, said cancer trial enrollment remains lower, but she hopes it will improve overtime as people become more accustomed to the new extra-sanitized, socially distanced normal.
“Trials do require more frequent visits and more interactions with people,” she said. “That being said, I think most medical establishments are safer than the grocery store.”
Like Issaka, she also worries about the bitter harvest ahead.
“COVID has frightened people from just getting routine medical care,” she said. “They’re not getting their screening mammograms and colonoscopies. They’re not getting their bloodwork and their blood pressure checked. That’s not safe either.”
Health care providers, she said, are “working very hard” to make sure health care continues to be safe. And Seattle was recently found to have the lowest number of COVID-19 cases of any major U.S. city.
“At UW and SCCA, we screen people and we expect you to wear a mask and not come in if you have symptoms — all those key aspects of safe behavior,” she said. “And the data we have at all our hospitals suggests that most COVID-19 is from community contact, not that in the health care setting.” Listen to Linden present on cancer clinical trials in this video from the NW Metastatic Breast Cancer Series.
Terpko said she and her husband certainly feel less anxiety in areas where people follow the public health guidelines.
“The physical side is hard, but the mental piece of it is also huge,” she said. “So many people have worked so hard to make sure Jared is still here. The stem cell transplant was an absolute miracle. When people don’t respect mask wearing or personal space during this pandemic, they just don’t understand the circumstances. They don’t know the path he’s walked.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.
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