"These days it can seem like all other medical problems take a back seat to COVID-19, but remember that cancer care is still a priority for most oncologists."
Dr. William Matsui, University of Texas at Austin LIVESTRONG Cancer Institutes
Do not let the fear of COVID-19 stop you from following the directions of your physicians. Focus on the things you can control, do not neglect your own physical and mental health, and continue social distancing measures while following CDC guidelines.
These themes ran throughout comments in the Myeloma Crowd's second informal sampling of myeloma specialists.
Echoing Dr. Matsui, Dr. Natalie Callander from the University of Wisconsin-Madison has "continued to tell our patients that controlling their myeloma is really important." She has patients who are "frightened to leave the house" and cited an example of one who "had impending renal failure and I explained that saving kidneys was the top priority [and] stressed again that untreated myeloma was the biggest threat to their health."
"Doctors are reviewing each patient's case and weighing the benefits of continuing treatment and balancing these to the risks of being exposed to the virus," according to Dr. Faith Davies from New York University's Perlmutter Cancer Center.
If, however, you "have new symptoms (fever, shortness of breath, cough, nausea, diarrhea, loss of smell/taste)," Dr. Shaji Kumar of the Mayo Clinic advises patients to "reach out to their primary care providers first before heading out to the emergency room or clinic."
"I'm generally not an alarmist and usually recommend that my patients 'live life and don't live in a bubble,' but COVID is the one exception," said Dr. Sascha Tuchman from the University of North Carolina. "Very limited data out of China suggest that patients with both cancer (not necessarily myeloma) and COVID have a higher risk of severe illness and death. That's not surprising, but it's not reassuring either."
Much like myeloma, confirmed COVID-19 cases are "very heterogeneous" according to Dr. Jens Hillengass from the Roswell Park Comprehensive Cancer Center. Every case is unique. Dr. Kumar said the priority of researchers is "to collect data so we can learn more."
"This is unlike anything we've seen, so none of us here have the experience to know what to expect," Dr. Matsui observed. "We may have to make adjustments in treatments, and at times this can seem somewhat chaotic."
"Be prepared for possible changes in your health care team," cautioned Dr. Davies, "many centers are rotating their staff. This may mean you don't get to speak with your regular nurse or oncologist, but another member of the practice. They will obviously have access to your records and be trained in oncology but may need a few moments to become familiar with your case."
While most media attention has, rightly, focused on so-called pandemic hot zones, their experiences are informing physicians in places where infection rates are increasing.
"Since the peak impact of COVID-19 is estimated to be about a month or two away here [in Austin, Texas]," said Dr. Matsui, "we are using this time to understand the difficulties our colleagues in the hot zones have run into and try to plan and prepare accordingly."
Cancer specialists are preparing to "be called to take care of patients without any form of cancer," according to Dr. Tuchman, "rather we'll be 'plugging holes' for colleagues on other medical services who may be out due to COVID-related quarantine."
At UC San Diego, Dr. Caitlin Costello noted they "are preparing for 'the surge,' rescheduling all appointments, cancelling non-essential visits, and doing telemedicine visits." In Buffalo, New York, Dr. Hillengass said, "we are developing very detailed plans in case the surge comes to us."
Every doctor surveyed emphasized it is just as important to take care of seemingly non-medical issues.
"Everybody, get out and walk or do another form of exercise!" implored Dr. Callander, "it seems clear that underlying fitness really does make a difference in the ability of our patients to recover if they are infected."
Dr. Davies seconded these thoughts, "Looking after your general physical health and your mental health are also just as important as your myeloma care (bending, stretching, wriggling whilst being house bound is important to keep the muscles strong, don't watch TV all the time, do chat with people on the phone, or read a book)."
Consider joining the Myeloma Crowd's Muscles for Myeloma Fitness Challenge to help motivate you.
"I'm so proud of the creativity, ingenuity and am so inspired by my colleagues nationwide who are researching treatment options, sharing anecdotes of success, and developing novel means of caring for COVID patients," Dr. Costello noted. "I'm proud of the infected patients who are so brave and their families who are supporting them from a distance."
Dr. Matsui added, "our patients have been understanding and resilient. It's a great thing to see."
As isolated as we may feel, we must never stop reaching out.
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.