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Leukemia and the Stress of Delaying Care

Posted on May 21, 2020

Article written by
Kelly Crumrin

Article written by
Heather Lapidus Glassner

  • Some people with leukemia may have stem cell transplants or other treatments for cancer postponed due to the COVID-19 pandemic.
  • The pandemic may also cause delays in routine health care and supportive treatments for leukemia symptoms.
  • Uncertainty caused by these delays can contribute to anxiety and stress for people living with leukemia.
  • Doctor-recommended suggestions to manage stress and anxiety include yoga, healthful eating, and social connection.

Treatment for Acute Leukemia During COVID-19

A May 2020 article in Leukemia Research explored the impact of COVID-19 on people with acute leukemia. It cited several factors including delayed diagnosis, delays in chemotherapy, and deferral of hematopoietic stem cell transplantation (HSCT).

The authors wrote, “Delay in chemotherapy initiation may negatively affect prognosis, particularly in young (< 60-years-old) patients with favorable- or intermediate-risk disease.” In addition, for those who are in need of allogeneic (donor) stem cell transplantation, both the donor and the patient have to be free of COVID-19 for it to take place. Current recommendations are to postpone when possible. The authors went on to say, “If a delay in transplant results in the reappearance of a significant minimal residual disease (MRD), a negative impact on survival is well established.”

In a recent interview with MyLeukemiaTeam, Dr. David Blumenthal, a medical oncologist for Kaiser Permanente, discussed the importance of continuing treatment for acute leukemia. “Unfortunately, acute leukemia is a disease that moves too fast [to delay treatment],” he said. “We've had to continue all of our patients with acute leukemia on their treatment as scheduled. And we've really tried to be as careful as we can be with precautions.”

When Care Is Delayed

While most people currently undergoing treatment for acute lymphoblastic leukemia (ALL) or acute myeloid leukemia (AML) may not have treatment deferred, people waiting to start leukemia treatment and those concerned about relapse may be more likely to experience delays. One MyLeukemiaTeam member diagnosed with both ALL and chronic myeloid leukemia (CML) shared, “I was ready for bone marrow transplant until the COVID scare put it on hold. Now I relapsed and have 65 percent blast again. So disheartening.”

Supportive treatments, those that don’t fight cancer but improve leukemia symptoms and quality of life, may also be deferred for some people. “I’m still waiting to get back into IVIG infusions, but two have been cancelled because of COVID-19,” said a MyLeukemiaTeam member diagnosed with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL). “My energy and pain levels are at a dangerous low.”

Many MyLeukemiaTeam members report delays in treatments for underlying conditions, which prolongs pain or increases worry about leaving them untreated. A man diagnosed with a chronic form of leukemia wrote, “Besides dealing with leukemia, I have two pinched nerves in my lower back. Injections to relieve pain have been postponed due to this mess.” Another member posted, “I need a heart ablation procedure, and I am almost sure they will postpone. AFib [atrial fibrillation] is exhausting.”

The COVID-19 pandemic can also delay the routine health care procedures people living with leukemia deferred due to cancer treatment. “I have already put off an eye exam, a dental visit, and a skin check for a year because of leukemia and stem cell transplant,” wrote another member. “Now I have to delay because of the coronavirus. Hopefully, my teeth won’t rot and my cataracts won’t blind me.”

Unpredictable treatment schedules, fear of relapse or cancer progression during the wait, and worsening symptoms can all contribute to the stress already experienced by those with leukemia.

Managing Stress and Leukemia During COVID-19

Uncertainty about treatment schedules — 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 routines caused by the pandemic contribute to feelings of 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:

  • 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, MyLeukemiaTeam offers a support group of over 5,100 individuals facing the same condition as you, 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.

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

Here are a few conversations and questions from members of MyLeukemiaTeam about their recent experiences with delays:

References

  1. Acute leukemia in the time of COVID-19 — Leukemia Research
  2. To Manage COVID-19 Stress, Develop Healthy New Habits and Consume News in Moderation — USC News
  3. Yoga for Inner Peace: A Stress-Relieving Sequence — Yoga Journal
  4. A Beginner’s Guide to Meditation — Yoga Journal
  5. Being Present With Cancer — Mindful
  6. Want To Boost Your Immune System? A Healthy Diet Is An Important Start — Forbes
  7. Self Care During Cancer — Abramson Cancer Center Penn Medicine
  8. Spirituality and Prayer Relieve Stress — Psych Central
  9. When and How to Wash Your Hands — The Centers for Disease Control and Prevention (CDC)
  10. Situation Summary — The Centers for Disease Control and Prevention (CDC)

Kelly leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

Heather 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.

A MyLeukemiaTeam Member said:

I have CLL. Was diagnosed from routine physical in March, one week before Covid shut things down. Had few tests and one visit w/oncologist then nothing… read more

posted about 1 month ago

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