According to a survey by the Cancer Action Network, 51 percent of people who are receiving or recently completed treatment for cancer have reported an impact on their care because of COVID-19. Nearly 1 in 4 reported a delay in care or treatment. These delays have required many people living with cancer to wait indefinitely to schedule in-person appointments, follow-up imaging and other monitoring, and treatments such as stem cell transplants.
As much as possible, oncologists are trying to continue treatment for myeloma while adjusting schedules or treatments to keep their patients safe. Paul Richardson, clinical program leader and director of clinical research at Dana-Farber’s Jerome Lipper Multiple Myeloma Center, was recently interviewed by Boston.com. Dr. Richardson stated, “You can’t simply say, we’ll take time off treatment and have you medication-free for five or six months, and then we can start again. It’s just not how myeloma operates. You have to be able to keep your patients on continuous therapy.”
Dr. Richardson described ways in which treatment for myeloma can be continued in most cases. “Fortunately, most of our new therapies are pills or infusions that can be given periodically. … This has allowed us to continue treatments by pill and oral therapies with the patients staying home, but [we’re] using telemedicine to call the patient [and] monitor them, and having blood tests done locally, blood tests faxed in, and then adjust their medication accordingly.”
Autologous stem cell transplants (ASCTs), in which a person’s own stem cells are returned after chemotherapy, are a common treatment for myeloma. ASCT is the standard treatment for newly diagnosed multiple myeloma in many cases. Currently, several leading cancer centers and the American Society for Transplantation and Cellular Therapy recommend people with myeloma have a discussion with their doctor about postponing planned stem cell transplants.
For those whose doctors recommend postponement, the delay in this important treatment procedure adds to MyMyelomaTeam members’ anxiety and worries. One member whose stem cell transplant was postponed said, “I know I should be grateful for this time, but I am anxious to have the SCT and move forward in my treatment.” “I totally understand! I just wanted to get mine over with too!” responded another member.
Another MyMyelomaTeam member expressed similar concern and frustration, writing, “I found out that, due to the coronavirus, my stem cell transplant has been postponed until June or July. I've been housebound for 90+ days and I'm getting depressed. I just want to be able to move past this.”
In some cases where members have had to postpone their stem cell transplant, their doctors have recommended they undergo further chemotherapy or begin taking medication.
Uncertainty about when myeloma treatment can be rescheduled — and about the future in general — adds stress to an already challenging situation for people living with cancer. According to a recent article from USC News, disruptions in our routines caused by the pandemic contribute to feelings of uncertainty and instability. “The routines built up over time are gone, so we all have to make new decisions about how to live now,” said Wendy Wood, provost professor of psychology and business at the University of Southern California. “Everything we do requires a decision, takes more energy, and feels uncertain.”
Dr. Wood suggests creating new, healthy habits to help cope with stress. In the same article, Sheila Teresa Murphy, associate professor of communication at USC, offered some specific recommendations around news and media:
Here are more ideas to help manage stress and take care of your mental health during this stressful time:
You can make a plan to reach out to friends or loved ones by phone or video chat to minimize feelings of isolation. As always, MyMyelomaTeam offers a support group of more than 6,500 people living with myeloma, available online.
If at any point your stress or anxiety become overwhelming, it is important to contact your health care providers. They can help you find better ways to manage stress.
Here are a few conversations and questions from members of MyMyelomaTeam about their recent experiences with treatment delays:
Has your myeloma treatment been impacted by COVID-19? How are you keeping stress in check? Please share in the comments below or post on MyMyelomaTeam.