Comprehensive information on the virus

• COVID-19 pandemic page from the World Health Organization
• Within the United States: COVID-19 information page from the U.S. Centers for Disease Control and Prevention (CDC)
• Outside the United States: Click here for a list of national public health agencies where you can find the website for your country and access their COVID-19 information

Information about COVID-19 and cancer

You can find more information about considerations for cancer patients in the following resources:

• Coronavirus: What cancer patients need to know from the Fred Hutchinson Cancer Research Center
• The 2019 Novel Coronavirus (COVID-19): Key Facts and What It Means for People with Cancer from Memorial Sloan Kettering Cancer Center
• Coronavirus: What People with Cancer Should Know from the National Cancer Institute
• Why People with Cancer are More Likely to Get Infections from American Cancer Society
• A Message to Patients with Cancer and Health Care Providers About COVID-19 from the U.S. Food and Drug Administration (FDA)
• Guidelines on COVID-19 for Cancer Patients from the European Cancer Patient Coalition
• Sarcoma and Coronavirus: Your Questions Answered webinar from Sarcoma Foundation of America
• Spotlight on Coronavirus Q&A podcast from Cancer Support Community, Part 1 and Part 2

Guidance from the Chordoma Foundation Medical Advisory Board for chordoma patients and caregivers

The Chordoma Foundation Medical Advisory Board (MAB) notes that, while the situation around the world continues to change, there are some potential impacts on chordoma patients and they have provided the following information and guidance.

How might the virus impact healthcare in general?

In areas where there are large numbers of people infected, the healthcare system may become overwhelmed by people who need care for severe COVID-19 symptoms. If this happens, it is possible that other types of care would be interrupted due to a number of factors, including:

• ICU beds and other items such as ventilators may be needed by those hospitalized with the virus
• Doctors from all disciplines, including surgeons and oncologists, could be required to provide care to COVID-19 patients
• Surgeries that are considered elective may be postponed due to a number of factors, including social distancing restrictions and shortage of available medical staff or medical supplies. Most surgeries involving chordoma tumors would not be considered elective, but they may have to go through an approval process.

If you are currently receiving treatment, talk with your healthcare provider(s) about what would happen in the event you are unable to continue receiving care at that facility for a period of time.

If you are currently planning for treatment or anticipate needing treatment within the next several months, we suggest proactively talking with your healthcare provider about how the evolving situation could affect your care.

Additionally, many major medical centers and even some smaller clinics, including primary care practices, offer virtual, or telemedicine, visits. These services are now more widely available in lieu of in-person visits so that doctors can continue to provide care to their patients. In early March 2020, telemedicine benefits were granted to all Medicare patients in the U.S. as a result of the COVID-19 pandemic.

What should chordoma patients know about COVID-19?

Chordoma patients whose immune systems may be compromised due to treatment or other issues may be at higher risk. If you recently had surgery or radiation, are being treated with systemic therapies, are taking corticosteroids like dexamethasone, or are in some other way immunocompromised, you should talk to your doctors about what steps you should take to stay healthy.

You can stay up to date with your medical center by visiting their COVID-19 information page. We have put together a list, below, for many of the major centers. Email us at support@chordoma.org if you need help finding information for your center.

Ways to stay healthy

The best way to not get sick is to avoid exposure to COVID-19. Our MAB stresses that chordoma patients and caregivers should be vigilant in following the CDC’s guidelines on how to help protect yourself from being exposed:

• Wash your hands! And wash them often, with soap and water, for at least 20 seconds. Read about the right way to wash your hands or watch this short video.
• Use an alcohol-based hand sanitizer that contains at least 60 percent alcohol if soap and water are not available.
• Avoid touching your eyes, nose, and mouth with unwashed hands.
• Avoid close contact with people who are sick. If you are sick, follow these steps.
• Put distance between yourself and other people.
• Stay home as much as possible.
• Cover your mouth and nose with a cloth face covering when you go out in public. It is possible to spread the virus even when you do not have symptoms.
• Cough or sneeze into a tissue. Throw used tissues in the trash. If you don’t have a tissue, cough or sneeze into your arm. Immediately wash your hands. 
• Clean and disinfect frequently touched objects and surfaces daily. More information on cleaning and disinfection is here.

COVID-19 vaccines for people with cancer

There are a number of vaccines currently approved or undergoing governmental approval processes and most countries have begun vaccinations. Some medical centers and cancer organizations have released statements about whether the vaccine is safe and recommended for people with cancer, including those listed below. Patients who are undergoing treatment with systemic therapies or radiation, which may weaken the immune system, should discuss with their doctors whether it is safe for them to get the vaccine.

• COVID-19 Vaccination Guide for People With Cancer from the National Comprehensive Cancer Network (NCCN)
• If I have cancer now or had it in the past, should I get a coronavirus vaccine? from the U.S. National Cancer Institute
• ESMO statements for vaccination against COVID-19 in patients with cancer from the European Society of Medical Oncology (ESMO)
• What You Need to Know about the COVID-19 Vaccines from Memorial Sloan Kettering Cancer Center
• What cancer patients need to know about COVID-19 vaccines from Cancer Treatment Centers of America
• 11 things to know about the COVID-19 vaccines from MD Anderson Cancer Center
• Spotlight on Coronavirus: Vaccines podcast from Cancer Support Community

Information from medical institutions

Many medical institutions have made information and guidance about COVID-19 available to their patients, including those listed below. If you do not see your medical center listed, visit their website or contact us at support@chordoma.org and we are glad to assist you.

• Brigham and Women’s Hospital
• Dana-Farber Cancer Institute
• Heidelberg University Hospital
• Istituto Nazionale dei Tumori (Milan)
• Johns Hopkins Medicine
• Kaiser Permanente
• Keck Medicine of USC
• Leids Universitair Medisch Centrum (Leiden University Medical Center, the Netherlands)
• MD Anderson Cancer Center
• Massachusetts General Hospital 
• Mayo Clinic
• Memorial Sloan Kettering Cancer Center
• Northwestern Medicine
• NYU Langone Medical Center
• Pacific Neuroscience Institute
• Penn Medicine
• Providence St. John’s Health Center/John Wayne Cancer Institute
• Rhode Island Hospital/Lifespan
• Seattle Cancer Care Alliance
• Stanford Medicine
• UCLA Health
• UCSF Health
• UF Health Jacksonville
• Unity Health Toronto (Providence Healthcare, St. Joseph’s Health Centre, and St. Michael’s Hospital)
• University College London Hospital
• University of Michigan Medicine
• University of Pittsburgh Medical Center (UPMC)
• University of Washington Medicine