“It has been a challenge to balance the risk of myeloma treatment with the risk of infection.”
Amrita Krishnan, Director of Myeloma Research at the City of Hope Cancer Center
The Myeloma Crowd conducted a random survey of myeloma specialists to get a sense of how their practices are adjusting during this ever-changing new normal of a COVID-19 crisis. Interacting with patients, adjusting treatments, limiting clinical trials, and preparing for an unknown short-term future are their primary concerns.
Limiting contact and rapidly expanding telemedicine through phone and video are the biggest and most obvious effects of doctor-patient interaction.
“We have had to make considerable changes to our practice,” said Shaji Kumar of the Mayo Clinic, “The theme…behind the changes is to minimize the need for patients to come into the hospital…”
Geography also matters. Doctors in Seattle and New York, for example, are dealing with a more prevalent incidence than other parts of the country, although a spread is anticipated. Evidence suggests that the “experienced” doctors are warning their colleagues to be more prepared for what is coming and not to stop preventive measures too early.
“Very strict screening of patients (and health care workers) who are entering the clinic and who are in-clinic is in place,” noted Dr. Edward Libby of the Seattle Cancer Care Alliance. He added, “patients whose myeloma has been stable for a long time are having their visits delayed for 1-3 months (if they are agreeable to this).”
Dr. Suzanne Lentzsch, Director, Multiple Myeloma and Amyloidosis program at Columbia University in New York said:“70% of treatments [are] on hold,” and “We have 100% telemedicine since it is not safe for the patients to use public transportation.” The rapidly increasing virus incidence in New York has, according to Dr. Lentzsch, became a “crisis” that is made worse by inadequate preparation, “due to the lack of testing and the complete absence of N-95 masks we do not know who is infected and cannot protect ourselves appropriately.”
On the other hand, Dr. Pritesh Patel of the University of Illinois at Chicago reports, “we fortunately haven't had any…patients who [are] infected.”
When asked if he was being asked to see other patients outside of myeloma, Dr. Kumar answered, “Not yet.”
We can learn two important lessons. First, prepare and think about how to be proactive. Second, even when it seems to have passed, it is important to continue to take prudent preventive measures.
Changes will be experienced by everyone, but it seems the most impact will fall on newly diagnosed patients and those who want to enroll in clinical trials.
Dr. William Matsui, Deputy Director of the LIVESTRONG Cancer Institutes at the University of Texas at Austin and myeloma specialist, said that he has “started converting some patients from IV or SC regimens to oral drugs.” Dr. Kumar added that at Mayo they “are trying to convert to all oral regimens when possible…”
“In some cases, we are delaying autologous stem cell transplants,” said Dr. Callander of the University of Wisconsin—Madison.
Dr. Sikander Ailawadhi, from the Mayo Clinic in Jacksonville, FL added, “In some cases, we are letting the imaging and blood work happen so that we can contact the patient as a telephone visit or virtual visit. Any chemotherapy that is considered ongoing treatment to keep the patient's disease controlled is being continued…patients who are only on long-term surveillance…are [having their visits rescheduled].”
“For the most part, transplants for myeloma are being delayed,” said Dr. Caitlin Costello of the UC San Diego Moores Cancer Center, “If patients are tolerating and responding to their current treatment, we will delay collection and transplant for now.”
This corresponded with the approach taken in Seattle according to Dr. Libby, “We are delaying autologous stem cell transplants for myeloma” and they are “not recommending any major changes to patient treatment(s) or chemotherapy at this time.”
In Chicago, Dr. Patel is “prioritizing very high-risk patients and [continuing] with stem cell collections but have…defer[red] up front transplant in lower-risk patients” and they are “de-intensifying treatment with certain drugs such as steroids in order to limit infection risk.”
[See SparkCures' Brian McMahon’s statement about the dramatic slowing of myeloma clinical trial activity.]
“We have slowed clinical trial accrual,” said Sascha Tuchman of the University of North Carolina’ Lineberger CCC, “we are now only enrolling patients who need treatment now, and for whom trial participation will not elevate COVID-related risk beyond what a patient would experience from routine clinical care.”
Dr. Matsui is “putting a hold on starting new clinical trials or enrolling new patients on trials.” Dr. Callander’s “cancer center made the difficult decision to essentially halt new clinical trial enrollments except under extreme conditions.”
Other institutions are limiting clinical trial participation, as another expert put it, “based on study-by-study and patient-by-patient basis.” As Dr. Kumar summed up, “we are limiting enrollment to the trials where the treatment is likely to be of benefit that clearly outweighs any risk associated with the ongoing pandemic.”
Although there will be many inconveniences and frustrations experienced by diagnosed myeloma patients now and in the foreseeable future, generally the care is as good as it has ever been thanks to the dedication of the doctors and nurses caring for myeloma patients.
There is no perfect solution, but for the most part, medical care for cancer patients is still accessible. Indeed, as patients, the risk is greater that they will become infected by patients, taking them out of the pool of health care providers.
We need to remember the sobering reality of our times that Dr. Jens Hillengass of the Roswell Park Comprehensive Cancer Center (CCC) in Buffalo, NY sums up so well, “There is so little scientific literature about COVID and cancer and of course even less for COVID and myeloma.”
As Dr. Hillengass emphasizes, “We have to come up with recommendations based on an ever-changing knowledge base.” That means “reading about experiences from other countries and centers,” something that takes up a lot of the time and effort—away from pure myeloma research—of those caring for myeloma patients.
We have to keep our perspective, never forget our common sense of duty to others, and remember to take care of ourselves.
Perhaps Dr. Callander’s counsel for the myeloma community might be the most important:
“We are emphasizing exercise, time outdoors, playing with pets, interacting with friends and family through the phone and computers. We think our patients understand the changes and in many cases are relieved that they may not have to come to the clinic. We believe that together we will survive this outbreak and be back to our myeloma research mission soon.”
about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.