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People With Myeloma Face Stress Due to Delayed Treatments

Posted on May 12, 2020
Article written by
Heather Lapidus Glassner
Article written by
Kelly Crumrin

  • For some people with myeloma, stem cell transplants and other procedures have been postponed due to the COVID-19 pandemic.
  • Uncertainty about scheduling care is contributing to anxiety and stress for many members of MyMyelomaTeam.
  • Stress management techniques such as yoga, healthful eating, and social connection may help keep anxiety under control.

Delayed Care During COVID-19

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.

Making Adjustments to Continue Treatment

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.”

Delaying Stem Cell Transplants

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.

Managing Stress and Myeloma During COVID-19

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:

  • Limit the amount of time you spend watching or reading the news. Don’t binge-watch.
  • When you feel overwhelmed, turn the news off and try reading a good book or watching a movie you enjoy instead.

Here are more ideas to help manage stress and take care of your mental health during this stressful time:

  • Stay connected with your health care providers.
  • Practice yoga, meditation, and mindfulness.
  • Eat healthfully.
  • Try aromatherapy to see if it helps with relaxation.
  • Try to exercise, if your doctor says you can and you are able.
  • If you are religious or spiritual, prayer may help.
  • Wash your hands often.
  • Practice physical distancing, but stay connected to family and friends.

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.

See also COVID-19 and Myeloma Essential Updates.
Stay up to date with the CDC’s situation summary about COVID-19.

Heather Lapidus Glassner has over two decades of experience in market research. She has conducted social listening and quantitative survey research across a variety of conditions. Learn more about her here.
Kelly Crumrin is a senior editor at MyHealthTeams and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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