This information was last updated on December 8, 2020.

A core value of NBTS is, “Patients First,” and as such we are committed to providing helpful, accurate, timely, and reliable content to our community regarding coronavirus (COVID-19). Below is information we have compiled, in one easy to access spot, to help you better understand our response to COVID-19, how to protect yourself and others, and what resources are available for behavioral health support.

As we have seen over these past few weeks, the situation with COVID-19 is fluid and information is at times overwhelming. We will continue to provide to our community facts you can count on as we navigate the road ahead together.

COVID-19 and Brain Tumors – Frequently Asked Questions

COVID-19 is a novel form of a large family of viruses called coronaviruses. The illness causes flu-like symptoms, with the major complication arising from impacts to the respiratory system.

The disease can spread from person to person, through small droplets from the nose or mouth that may spread when a person coughs or sneezes. Another person may catch COVID-19 by breathing in these droplets or by touching a surface that the droplets have landed on and then touching their eyes, nose, or mouth.

Individuals over the age of 60 and those with chronic conditions and/or compromised immune systems are likely at higher-risk for contracting the virus as well as experiencing a more severe illness after infection. Many brain tumor patients, especially malignant brain tumor patients, are considered high-risk, as chemotherapy and radiation can compromise a patient’s immune system, making them more susceptible to COVID-19.

For a comprehensive collection of information regarding COVID-19, visit the National Institutes of Health (NIH) COVID-19 resource page. 

How Can I Protect Myself?

The best way to prevent illness is to avoid being exposed to the virus. Precautions for avoiding COVID-19 are the same as for other contagious respiratory illnesses, such as influenza (flu).

The Centers for Disease Control and Prevention (CDC) recommends everyday preventive measures to help prevent the spread of respiratory infections, including to:

• Avoid large social gatherings and close contact with people outside of your home, especially those who are sick or who recently were in contact with someone who is, or who recently traveled to a country or state where the COVID-19 outbreak is widespread.
• Avoid unnecessary person-to-person contact, such as handshakes.
• Stay home if COVID-19 is spreading in your community.
• Avoid unnecessary use of public transportation, air travel, and especially cruises.
• Avoid touching your eyes, nose, and mouth.
• Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; after blowing your nose, coughing, or sneezing; and before and after coming in contact with others.
• If soap and water are not readily available, use a hand sanitizer that contains at least 60% alcohol. Cover all surfaces of your hands and rub them together until they feel dry.
• Get a flu vaccine.
• Routinely clean all “high-touch” surfaces.
  • Clean AND disinfect frequently touched surfaces daily. This includes tables, doorknobs, light switches, countertops, handles, desks, phones, keyboards, toilets, faucets, and sinks.
  • If surfaces are dirty, clean them: Use detergent or soap and water prior to disinfection. Click here for the Centers for Disease Control and Prevention (CDC) guidelines for cleaning and disinfecting.

What Should I Know if I am Currently Receiving Treatment?

If you are receiving treatment for a brain tumor, you may need to travel to your doctor’s office or hospital for medical care. If so, consider these additional precautions, as well as those above:

Consider these other precautions as well:

• Be extra vigilant about hand hygiene and not touching your face.
• Ask your health care providers and caregivers to wash their hands before treating you.
• Make a plan with your doctor to monitor for symptoms.
• Ask your doctor if a scheduled visit/consultation can be conducted by phone, teleconference, or other telehealth* measure.
• Remind friends and family to stay away from you if they’re sick, or recently may have been in contact with someone who is presumed to have COVID-19.
• Make a plan with your caregiver or other loved ones in case you get sick.
• Make a plan with your employer to work from home.
• Stock up on groceries and extra medications.

As health care facilities work to protect their patient populations and staff, you may see restrictions at your treating hospital that include reduced entry points into the hospital, a screening of visitors for possible symptoms of COVID-19, and no visitors under a certain age allowed to enter the building, as examples. You may want to visit the website of your treating hospital or call your treatment team ahead of your next appointment so you are prepared for any changes that await you upon arrival.

• Your health care facility may screen you for COVID-19 symptoms over the phone before your appointment and once you arrive for your appointment.
• If your health care facility is not allowing a caregiver or family member to accompany you to your appointment, check with your health care team to see if they can join you by speakerphone or video.
• If you need blood drawn for your regular routine lab tests you may be able to do this at home. Check with your health care team.

Preparing for a Telehealth Appointment

Health care providers are turning to telehealth solutions for conducting certain services remotely. Check with your care team and health insurance provider to see if this is available to you, appropriate for you, and covered within your plan.

If telemedicine is an option for you, below are some tips and suggestions for preparing for a virtual appointment.

• Check your equipment – you will need a smartphone, tablet, or computer with video, audio, a microphone, and a reliable wi-fi connection.
• Test your equipment ahead of the appointment to be sure you can properly operate the video, audio, and microphone components.
• Plug in your device so you do not lose power during your appointment.
• Adjust the lighting so you are easily seen by your health care provider. Avoid light in the background that may make it difficult to see you.
• Find a quiet place with minimal background noise and as few distractions as possible.
• Outline what you would like to talk about including symptoms, changes in medication, how you are feeling overall mentally and physically, general notes, and questions for your health care provider.
• Have a notebook and pen ready to write down things you want to remember or answers to your questions.
• Write your doctor’s number on your notebook should a technical issue arise.
• Practice – taking five minutes to do a run through with equipment, the space where you will be, and lighting can help reduce any uncertainty about a telemedicine visit.

For more information visit: National Cancer Institute (NCI) – What should I do about getting treatment?

What Should I Know if I am a Participant in a Clinical Trial?

Call your clinical trial research team and follow their guidance.

Additional Resources:

• Food and Drug Administration (FDA) – Guidance on the Conduct of Clinical Trials of Medical Products During the COVID-19 Pandemic
• National Cancer Institute (NCI) – Guidance for Clinical Trials’ Activities During the COVID-19 Pandemic
• National Cancer Institute (NCI) – I Participate in a Clinical Trial at a Medical Facility. What Should I Do?

If I Have Cancer, Am I at Higher Risk of Getting COVID-19?

Some types of cancer and treatments such as chemotherapy can weaken your immune system and may increase your risk of any infection, including COVID-19. During chemotherapy, there will be times in your treatment cycle when you are at increased risk of infection.

Adults and children with serious chronic health conditions, including cancer, are at higher risk of developing more serious complications from contagious illnesses such as COVID-19.

At this time, there is no evidence to support changing or withholding chemotherapy or immunotherapy in patients with cancer. Withholding critical anti-cancer or immunosuppressive therapy is not currently recommended.

For more information visit: National Cancer Institute (NCI) – What People with Cancer Should Know

Should I be Tested for COVID-19

If you have symptoms of COVID-19 and want to get tested:

• Call your healthcare provider first if you think you have been exposed to COVID-19 and have symptoms of an infection.
• Visit your state or local health department’s website to look for the latest local information on testing.

If you are caring for someone with COVID-19 at home:

• Monitor for emergency signs.
• Prevent the spread of germs.
• Treat symptoms.
• Carefully consider when to end home isolation.

There are two kinds of tests available for COVID-19:

• Viral tests will tell you if you have a current infection.
• Antibody tests will tell you if you had a previous infection.

For more information on COVID-19 testing visit: Centers for Disease Control and Prevention (CDC) – Coronavirus Disease 2019 (COVID-19) Testing Overview.

For more information on caring for someone with COVID-19 visit: Centers for Disease Control and Prevention (CDC) – Coronavirus Disease 2019 (COVID-19) Caring for Someone Sick.

Facemasks

The Centers for Disease Control and Prevention (CDC) recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies) especially in areas of significant community-based transmission.

• Centers for Disease Control and Prevention (CDC) – Masks
• Centers for Disease Control and Prevention (CDC) – How to Make your own Face Covering with Dr. Jerome Adams, U.S. Surgeon General

Thanks to a generous donation from Karyopharm Therapeutics, NBTS has a limited number of medical grade masks available for our brain tumor community. If you are in need of some masks, please contact us at patientnavigator@braintumor.org.

Gatherings and the Holidays

With COVID-19 cases continuing to rise across the country, public health authorities are strongly advising that all Americans keep holiday gatherings to smaller groups and, ideally, only other members of your household. This guidance is of particular importance to those who fall into “high-risk” categories, which includes patients whose immune systems are compromised due to treatment they are/have received for a brain tumor. Below are links to more information regarding this advice from the U.S. Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO).

Centers for Disease Control and Prevention (CDC) – Holiday Celebrations and Small Gatherings

World Health Organization (WHO) – Small Public Gatherings

Vanderbilt Health has a great article on staying connected with loved ones during what could be a challenging holiday season for many, complete with creative tips to make the most out of a less-than-ideal situation.

Medical and Treatment Developments for COVID-19

For the latest science-based information regarding COVID-19 and the products we use, the food we eat, and the medicine we take, visit the Reagan-Udall Foundation for the Food and Drug Administration (FDA).

COVID-19 Vaccine Information

Welcome news of positive data emerging from clinical trials on potential COVID-19 vaccines has offered light at the end of the dark tunnel that has been the coronavirus pandemic. For information on potential vaccines, how they work, and how they might be distributed and administered we’ve compiled the links below.

Centers for Disease Control and Prevention (CDC) – Frequently Asked Questions About the COVID-19 Vaccine

Centers for Disease Control and Prevention (CDC) – Facts About COVID-19 Vaccines

Centers for Disease Control and Prevention (CDC) – Understanding How COVID-19 Vaccines Work

Centers for Disease Control and Prevention (CDC) – 8 Things to Know About Vaccine Planning

World Health Organization (WHO) – The Push for a COVID-19 Vaccine

COVID-19 Testing

As cases are expected to continue to rise, understanding when, how, and where to receive a COVID-19 test is critical. Information on these questions and others related to testing are answered in the resources linked below.

Centers for Disease Control and Prevention (CDC) – Coronavirus Self-Checker

Centers for Disease Control and Prevention (CDC) – COVID-19 Testing Overview

Centers for Disease Control and Prevention (CDC) – What Your Test Results Mean

Centers for Disease Control and Prevention (CDC) – Viral Test for COVID-19

Taking Care of Your Behavioral Health

A stressful situation like an infectious disease outbreak that requires social distancing, quarantine, or isolation can cause a variety of reactions in different people. You may feel:

• Anxiety, worry, or fear
• Concern
• Uncertainty or frustration
• Loneliness
• Anger
• Boredom and frustration
• Uncertainty or ambivalence
• A desire to use alcohol or drugs to cope
• Symptoms of depression
• Symptoms of post-traumatic stress disorder (PTSD)

Ways to Cope with Stress:

• Take a break! Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be upsetting.
• Take care of your body.
  • Take deep breaths, stretch, or meditate.
  • Try to eat healthy, well-balanced meals.
  • Exercise regularly, get plenty of sleep.
  • Avoid alcohol and drugs.
• Make time to unwind. Try to do some other activities you enjoy. 
• Connect with others. Talk with people you trust about your concerns and how you are feeling.
• Join our Brain Tumor Support Conversations for an honest, supportive discussion with brain tumor patients and care partners.
• Attend a free, virtual Meditation Mondays class to learn techniques of meditation and mindfulness that may help manage stress and anxiety.

If you or a loved one experience any of these reactions for 2 to 4 weeks or more, contact your health care provider or one of the resources below. For more information on COVID-19 and behavioral health, visit: Centers for Disease Control and Prevention (CDC) – Coronavirus Disease 2019 (COVID-19) Coping with Stress.

Other resources related to COVID-19 and anxiety can be found with these links:

• Anxiety and Depression Association of America (ADAA) – Coronavirus Corner – Helpful Expert Tips and Resources to Manage Anxiety
• World Health Organization (WHO) – Coping with Stress During the 2019-nCoV Outbreak

Resources for Helping our Children Cope During COVID-19

• Centers for Disease Control and Prevention (CDC) – Helping Children Cope
• World Health Organization (WHO) – Helping Children Cope with Stress During the 2019-nCoV Outbreak
• American Academy of Experts in Traumatic Stress (AAETS) – Helping Children Cope Emotionally with the Coronavirus (COVID-19) 

Substance Abuse and Mental Health Services Administration

SAMHSA’s Disaster Distress Helpline Toll-Free: 1-800-985-5990 (English and Español)
SMS: Text TalkWithUs to 66746
SMS (Español): “Hablanos” al 66746
TTY: 1-800-846-8517
Website (English): http://www.disasterdistress.samhsa.gov
Treatment Locator Behavioral Health Treatment Services Locator Website: https://findtreatment.samhsa.gov/

Information for Parents of Children with Cancer

• American Childhood Cancer Organization (ACCO) – Draw Alongs with ACCO
• American Childhood Cancer Organization (ACCO) – Emotional Communication Kit Online
• American Childhood Cancer Organization (ACCO) – Print at Home Coloring Pages
• American Childhood Cancer Organization (ACCO) – Yoga with a Gold Ribbon Hero
• Children’s Oncology Group (COG) – COVID-19 and Your Child, Teen, or Young Adult with Cancer
• St. Jude Children’s Research Hospital – Are Children at Higher Risk for COVID-19?
• St. Jude Children’s Research Hospital – What Should I Do if My Child is Immunocompromised?

Peer to Peer Connections During COVID-19

• People with serious illness can teach us a lot about living with COVID-19 by Adam Hayden, a co-founder and facilitator of NBTS’s monthly Brain Tumor Support Conversations.
• Living with brain cancer has prepared me for Coronavirus by Jeremy Pivor, graduate student, brain tumor survivor, writer, and advocate.
• Brain Tumor Support Conversations are an online support group run by the brain tumor community for the brain tumor community. Share your brain tumor story in light of COVID-19 or simply use the time to connect with a like-minded community. Can’t make it? Share your story now or connect with NBTS on social media. Sign up now.

Financial Assistance Resources

• The Sontag Foundation COVID-19 Emergency Financial Assistance Fund – Call 1-855-824-7941 option 5.
• Cancer.net (ASCO) – COVID-19 Financial Resources for People with Cancer.
• COVID-19 Emergency Food Assistance Program – Team Rubicon, in collaboration with Patient Advocate Foundation and funded by the Bristol Myers Squibb Foundation, provides urgently needed assistance for immunocompromised individuals impacted by COVID-19. 

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