COVID-19 Resources and FAQs

The Centers for Disease Control and Prevention’s latest guidance says people with COVID may return to daily activities once they are fever free for at least 24 hours without taking fever reducing medicines like Tylenol or Advil, and their symptoms are improving. However, while they can return to work or school, they should continue wearing a well-fitting mask for five days.

This new guidance reflects that COVID is not nearly the risk it was to most people in past years, and it unifies CDC guidance for COVID with guidance for two other vaccine-preventable diseases, influenza and RSV. While this is positive news, LLS encourages blood cancer patients and survivors to evaluate and discuss their personal situation and risk levels with their oncology healthcare team when making decisions about COVID safety.

There has been a sharp decrease in COVID-related hospitalizations and deaths this winter compared to previous years. It is important to know that the vast majority of hospitalizations are in Americans who did not receive the latest shots and that vaccination decreases the chances of long COVID.

While getting vaccinated will provide at least some protection to most blood cancer patients, LLS developed COVID-19 Protection: Four Steps Blood Cancer Patients Can Take to help them stay safer from COVID-19 and balance out activities important to their quality of life. It’s important that patients make personalized risk decisions in consultation with their oncology treatment team.

LLS also joined the international COVID-19 Blood Cancer Coalition (ICBCC) in developing the booklet, “Navigating a Post-Pandemic World: A guide for immunocompromised patients,” that you can access here. The booklet includes practical tips for blood cancer patients to empower them when making decisions about how to stay safe from COVID and other infections.

Taking CD-20 targeting agents such as rituximab and obinutuzumab has been tied to an increased risk of severe COVID-19 in lymphoma patients. Patients with lymphoma may develop immune deficiency due to their disease or due to treatment with these medications, which can lead to increased incidence and severity of infections.

Yes, CAR T and other types of therapy that affect immune system cells (such as CD-20 targeting agents including rituximab and obinutuzumab, and BTK inhibitors such as ibrutinib, acalabrutinib and zanubrutinib) can increase the risk of getting COVID-19 and other infections. A recent study showed that about 2.5% of a group of people who received CAR T-cell therapy died from an infection, of which half of those infections were COVID-19. But it’s also vital to remember that these treatments are often lifesaving, so patients should work closely with their healthcare team to make a plan of action to protect themselves from infections before, during and after treatment.

This includes staying up to date on all recommended vaccines, working with their healthcare team on the timing of vaccines relative to their cancer treatments, and continuing to wear masks, wash hands frequently and practice social distancing. Patients and families are encouraged to review the LLS fact sheet, COVID-19 Protection: Four Steps Blood Cancer Patients Can Take for more information.
 

You should speak to your physician, as terminating BTK inhibitor therapy could lead to progression of CLL.

People who are moderately to severely immunocompromised may remain infectious beyond 20 days. For these people, CDC recommends an isolation period of at least 20 days and ending isolation in conjunction with testing and consultation with an infectious disease specialist. To end isolation, you should have at least two negative COVID-19 tests taken at least 24 hours apart (this can be an at-home test or a laboratory-based PCR test) and you should have no fever for at least 24 hours without taking a fever-reducing medicine like Advil or Tylenol. If you test positive beyond 30 days, you should consult with an infectious disease specialist. If you also have ongoing symptoms, you may benefit from high-titer convalescent plasma. You can read more about this treatment in the "Treatment and Prevention of COVID-19" section of this FAQ.

LLS recommends following CDC guidance, which generally does not state a preference for any particular COVID-19 vaccine. This can sometimes change during periods when updated vaccines are being introduced, at which time CDC may recommended an updated vaccine over the others until all brands are updated.

By “acting unvaccinated” we mean that in addition to getting vaccinated for COVID-19, blood cancer patients should continue to take preventive measures such as wearing masks, social distancing, hand washing, and avoiding crowds and poorly ventilated indoor spaces. This is especially important since some blood cancer patients may not get optimal protection from the vaccines and may be more susceptible to breakthrough infection after vaccination compared to the general public.

According to COVID-19 guidelines from Memorial Sloan Kettering Cancer Center in New York City, for patients who have received lymphocyte-depleting therapy, it is reasonable to consider deferring vaccination until six months after completion of therapy or until there is evidence of recovery of lymphocyte numbers and function. However, if there is any opportunity to be vaccinated BEFORE therapy starts, this should be done. We encourage you to discuss specific questions or concerns with your medical team as every patient’s experience is unique.

Certain lymphoma therapies, particularly rituximab and obinutuzumab, impair antibody response to vaccines even after treatment discontinuation. This does not mean people being treated with these medications should not get vaccinated or that the vaccines will not offer them some protection. However, patients should consider themselves still at risk and remain vigilant even after vaccination. 

Revaccination may be an option for patients who received one or more doses of the COVID-19 vaccine while undergoing treatment with these therapies. The CDC recommends that revaccination should start about six months after completion of therapy. However, a patient’s own healthcare team is best positioned to determine when and if revaccination is appropriate.

Published reports suggest a possible benefit from BTKis (ibrutinib and acalabrutinib) in people with severe COVID-19 infection. While more rigorous studies are needed to confirm those results, the American Society of Hematology’s (ASH) recommendation is to continue BTKis in patients with CLL diagnosed with COVID-19.

People who have a stem cell transplant or who receive CAR T-cell treatment are often immunosuppressed for months following treatment due to maintenance therapies and immunosuppressive drugs, among other factors. During this period, the immune system will not respond to vaccines. Research supported by LLS and reported by LLS chief scientific officer Dr. Lee Greenberger and others supports starting COVID-19 vaccination as early as three months following HSCT or CAR T-cell therapies.

It is very important for transplant and CAR T-cell patients to follow the vaccination schedule recommended by their healthcare team, and in the case of HSCT, their transplant team. Transplant teams in particular are very knowledgeable about when and how to go ahead with vaccinations following transplant.

Because vaccine effectiveness may be reduced in transplant patient compared to the general public, even after vaccination, LLS recommends that patients continue to follow additional safety precautions, like masking. 

Yes! Blood cancer patients should talk with their healthcare team about staying up to date with the most current COVID-19 vaccine recommended by the CDC. Updated vaccines are designed to improve protection against currently circulating COVID virus variants. Vaccines are meant to provide protection against severe disease, hospitalization, and death, as well as long COVID.

Some patients may have a diminished or even no antibody response due to their type of blood cancer or the type of treatment received. This does NOT mean that vaccination is futile. It is very important to continue receiving all COVID-19 vaccine doses as recommended. The latest research has also shown that even if antibody levels are low, their quality may improve with additional vaccine doses.

Antibodies are just one piece of the puzzle and there are other ways our immune systems respond to vaccination that may provide protection. A study from the LLS National Patient Registry shows that some blood cancer patients without detectable antibodies after vaccination develop T-cells that are primed to attack the COVID-19 virus. 

In addition to getting all vaccines as recommended, blood cancer patients and others with weakened immune systems should talk with their healthcare team to decide if pemivibart is right for them. Pemivibart is a monoclonal antibody to help prevent COVID-19 infection.

Antibody testing does not need to be done unless recommended and prescribed by your healthcare provider. Antibody tests should be interpreted with caution. Having antibodies to SARS-CoV-2, the virus that causes COVID-19, appears to offer some degree of protection from getting sick and from having severe disease. However, having antibodies may not eliminate your risk of a COVID-19 breakthrough infection completely. Moreover, even if antibodies are made, they may have reduced ability to block or reduce infections against certain variant strains of COVID-19. Fortunately, the latest COVID-19 vaccines as of September 2023 will induce antibodies that still retain some ability to protect against the latest strains of COVID-19.

Vaccines are designed to get the body to develop protection against a disease without us having to get sick. The Pfizer and Moderna vaccines use messenger RNA (mRNA) to instruct immune cells to make the so-called “spike protein” found on the surface of the COVID-19 virus. The Novavax vaccine includes fragments of COVID-19 that can trigger an immune response without causing COVID. 

Vaccines prepare your body to fight infection if you are exposed to the actual virus or to minimize its effects if you do become infected. The lightning speed at which the vaccines became available is truly remarkable, but they are built on decades of rigorous and thoroughly reviewed research.

Everyone 6 months and older should stay up to date with all COVID-19 vaccines as recommended by the CDC and in consultation with their own healthcare team. Specific vaccine products may be available for different age groups.

The J&J (Janssen) COVID-19 vaccine is no longer available or recommended in the United States. 

Because the immune system is very complex, there is no simple answer to who is moderately to severely immunocompromised. The National Institutes of Health COVID-19 guidelines include all blood cancer patients who are on active treatment in this category as well blood cancer patients who may have sub-optimal responses to COVID-19 vaccines regardless of their treatment status, such as those with chronic lymphocytic leukemia (CLL) and non-Hodgkin lymphoma. 

The immune system is also compromised in anyone who has had a stem cell transplant or who takes medicine to suppress their immune system. Blood cancer treatments that suppress the immune system include, but are not limited to: Bruton tyrosine kinase (BTK) inhibitors (e.g., Imbruvica, Calquence, Brukinsa), anti-CD20 antibody treatments (e.g., Rituxan, Gazyva) and certain CAR T-cell treatments (Breyanzi, Kymriah, Tecartus, Yescarta).

LLS strongly encourages all blood cancer patients, regardless of where they are in their treatment, remission or recovery (or “watch and wait” period, which is common for CLL patients), to talk with their blood cancer treatment team about the status of their immune system and whether additional 2023-2024 COVID-19 vaccine doses and the antibody pemivibart are right for them. 

Generally speaking, you should receive the same vaccine brand for your primary vaccination series. After that, vaccines are interchangeable, as long as you are receiving the most updated version.

Yes. Any COVID-19 vaccine can be given with other vaccines without regard to timing, but it’s always best to check with your healthcare provider. This includes getting vaccines like flu and COVID-19 on the same day, as long as the shots are given in different arms, or if in the same arm, at least 1 inch or more apart.

These are extremely important questions. Since the situation for every person is different, LLS recommends discussing the timing of your COVID-19 vaccination with your oncology healthcare team. Generally, it is best to vaccinate before cancer treatment as the immune response to the vaccine may be impaired in patients receiving treatments that affect the immune system.
 
However, if you are already undergoing treatment, that does not mean you should forego vaccination. Even if your immune system does not respond fully to vaccination, some protection is better than none, especially for a disease as serious as COVID-19, which tends to strike cancer patients harder. For this reason, it is advisable for patients with blood cancer to encourage family, friends and others they come in close contact with to get vaccinated too. 

Cases of myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the lining outside the heart) have been rarely observed after COVID-19 vaccination, most frequently in adolescent and young adult males within 7 days after receiving the second dose of an mRNA (Moderna or Pfizer) vaccine. Clinicals trials of the Novavax COVID-19 vaccine show a similar risk. 

According to data collected and monitored by the CDC, “most people with myocarditis or pericarditis who received care responded well to medicine and rest and felt better quickly.”

Severe allergy to specific components of any COVID-19 vaccine is rare but is a contraindication to vaccination. Please discuss your specific risk with your healthcare provider. 

Some people receiving a COVID-19 vaccine have reported swollen lymph nodes on the underside of the arm where the vaccine was administered 2-4 days after receiving the vaccine. Lymph node swelling can be a common reaction, or side effect, to any vaccine and those who have reported swollen lymph nodes usually have them return to normal within four weeks. In most cases, no additional imaging tests are needed for swollen lymph nodes after recent vaccinations unless the swelling persists or there are other symptoms. Understandably, for cancer patients who have had lymph node enlargement as a sign of their cancer, any enlargement may be of concern. You should contact your healthcare team to determine how to follow up if you have post-vaccine lymph node enlargement.

Even when fully vaccinated against COVID-19, CDC and LLS recommend that blood cancer patients and survivors should consider taking additional precautions to avoid infection. This is especially important since some blood cancer patients may not get optimal protection from the vaccines and may be more susceptible to infection and severe outcomes of COVID-19 after vaccination compared to the general public.

Blood cancer patients should remain cautious about travel. Travel increases your chances of getting infected and spreading COVID-19. Before considering travel, talk to your cancer care team about whether there are any additional precautions you should take, such as wearing a mask, washing your hands frequently, and avoiding crowds and poorly ventilated indoor spaces when possible. Make sure you travel with COVID-19 test kits that have not expired. You can check for details about specific test kits on the FDA web site here.

In addition to getting all vaccines as recommended, blood cancer patients and others with weakened immune systems should talk with their healthcare team to decide if pemivibart is right for them. Pemivibart is a monoclonal antibody to help prevent COVID-19 infection.

While vaccines offer at least some protection to most blood cancer patients, some will not get optimal protection and will be more susceptible to infection and severe outcomes of COVID-19 after vaccination compared to the general public. LLS encourages everyone to respect and protect blood cancer patients and others with weakened immune systems that put them at increased risk from COVID.19. 

Vaccination for everyone, including friends and family is important. By getting vaccinated, those with normal immunity can reduce the risk that they transmit COVID-19 to those whose immunity is impaired.

Protection starts quickly after the infusion. However, as with vaccines, breakthrough infection is possible. So even after receiving pemivibart, blood cancer patients should talk to their healthcare team about whether to continue taking additional precautions like masking and social distancing for another layer of protection.

Having an antibody test after receiving pemivibart is unlikely to provide any useful information. Since pemivibart is a direct infusion of antibodies, everyone who receives it would be expected to have detectable antibody levels for several months.

Monoclonal antibodies are only effective for a few months and provide only one type of protection (antibodies). Vaccines, and boosters in particular, may stimulate both antibodies, which are made by B cells, and T cells to fight off a COVID infection.

Through ongoing validation of at home tests, the U.S. Food and Drug Administration has been able to extend expiration dates for many at-home COVID test kits. You can check for details about specific test kits on the FDA web site here.

With the end of the public health emergency declaration, free testing is not as widely available as it once was. CDC has a website available to search for No-Cost COVID-19 Testing. State and local public health departments may also provide testing or be able to help state and local residents locate free testing sites.

Some people with compromised immune systems may have prolonged symptoms from COVID-19 and may remain infectious longer than those without immune impairment. The NIH expert treatment panel suggests one of the following treatment options for these patients, in consultation with their healthcare team. 1) Longer or additional treatment with the oral medication Paxlovid, 2) Longer or additional treatment with remdesivir, a medication given by injection, or 3) Treatment with high-titer COVID-19 convalescent plasma (collected from the blood of vaccinated donors who recently recovered from COVID-19). You can read more about these treatments below.

The National Institutes of Health COVID-19 expert panel recommends prompt treatment with antiviral medications for non-hospitalized patients with mild to moderate COVID-19 who are immunocompromised. 

The FDA has approved or authorized several antiviral medications to treat patients with COVID who are at increased risk of serious outcomes of the infection, such as blood cancer patients and survivors. To be effective, these treatments must be started as quickly as possible after a positive COVID-19 test or the onset of symptoms. There is also an infusion called high titer convalescent plasma that may be helpful in certain patients. Monoclonal antibody treatments are no longer recommended because they are not active against currently circulating strains.

Yes, you will need a prescription to receive any COVID-19 treatment or prevention (other than vaccines). Physicians, advanced practice registered nurses and physician assistants may prescribe these medications as authorized under individual state laws. You do not need a prescription to receive vaccines.

COVID-19 antivirals work by disrupting the replication of the virus inside the body. This lowers the amount of virus in the body (also called the viral load), which can help reduce the severity of COVID-19 symptoms and shorten the length of the illness. To be effective, antiviral medicines generally need to be taken very soon after a positive COVID-19 test or the onset of symptoms.

There are three antiviral medicines available to treat COVID-19 in people who are at high risk of progression to severe infection and outcomes, such as blood cancer patients. Paxlovid (ritonavir-boosted nirmatrelvir, for people 12 and older) and Lagevrio (molnupiravir, for people 18 and older) are oral medicines for use only in non-hospitalized patients; both are taken for five days. Veklury (remdesivir), which can be used in adults and pediatric patients as young as 28 days of age, is given by IV or injection at a healthcare facility for three days. c

Effective February 1, 2023, FDA removed a requirement for a positive COVID-19 test in order to receive treatment with an oral antiviral (Paxlovid or Lagevrio). This is because, in rare instances, individuals who were recently exposed to someone with COVID-19 and who develop symptoms consistent with COVID-19 may be diagnosed with the infection even before they test positive. It is important to seek care immediately if you have COVID-19 symptoms or test positive as these medications are most effective when started early.

COVID-19 rebound has been reported to occur in some patients between 2 and 8 days after initial recovery from COVID and usually includes recurrent but milder symptoms and a positive COVID test after having tested negative. Rebound is not limited to people who have taken Paxlovid; symptoms can flare up again after resolving even among people who do not take the medication.

Paxlovid is one of the most effective treatments available for people with mild-to-moderate COVID, lowering the risk of hospitalization or death significantly. 

Because Paxlovid is the only highly effective oral antiviral for the treatment of COVID-19, the expert panel at the National Institutes of Health recommends that when drug interactions can be safely managed, they should not prevent use of Paxlovid. 

However, Paxlovid should not be used at the same time as medications that interact strongly with the same liver enzyme Paxlovid relies on to be cleared from the body. The are no commonly used blood cancer drugs that are contraindicated for use at the same time as Paxlovid, however, there are many that have at least some interaction with this liver enzyme.

These drugs include but are not limited to ibrutinib and other BTK inhibitors, venetoclax, vinblastine and vincristine. In these cases, it is best to consult with your physician because he or she may be able to adjust medication dosages for safer administration. Most of the interaction potential for Paxlovid resolves within 2 to 3 days of when the last dose was taken, but may take longer in older persons.

Immunosuppressed patients should speak with their oncology healthcare team about whether getting a repeat PCR test to be sure they have cleared the virus is warranted. If the virus is not cleared after Paxlovid treatment, additional treatment such as convalescent plasma may need to be prescribed.

A monoclonal antibody is a lab-made version of the antibodies your body makes naturally to help fight off infections.

The company that made Evusheld, a monoclonal antibody that eventually lost effectiveness against newer COVID-19 variants, is researching a new formulation designed to be more broadly active against COVID-19 variants. There is a clinical trial testing the new treatment that is open to people with weaker immune systems. Patients and caregivers can learn more about joining the trial here. 

High titer COVID-19 convalescent plasma (CCP) is collected from blood donors who have recovered from COVID-19 infection. Plasma from donors who have not only recovered from COVID, but who also are vaccinated (sometimes called VaxCCP), has extremely high levels of antibodies that so far have been shown to neutralize all known COVID variants. CCP use is recommended for non-hospitalized immunocompromised patients by several medical societies, including the Infectious Disease Society of America. It should be given within 8 days of symptom onset. CCP evolves with the virus because recently collected plasma contains antibodies to recently circulating viruses.

Treatment with high titer convalescent plasma is an effective option in situations where other therapies are either not available or no longer effective or cannot be used due to drug interactions. Several recent studies have shown the effectiveness of high-titer plasma in treating immunosuppressed patients (including blood cancer patients) who have had breakthrough infection despite vaccination, and in whom monoclonal antibody and antiviral treatment have not been effective in clearing the virus.

Immunosuppressed patients may benefit from high titer convalescent plasma. Immunosuppressed patients may have breakthrough infection despite appropriate treatment, and this can lead to illness in the affected patient and continued risk of spreading the virus to others. Prolonged infection may also give the virus an opportunity to create variants that can then spread to others.

Talk to your healthcare team if you believe high-titer convalescent plasma is right for you. The U.S. FDA has authorized its use for the treatment of COVID-19 in patients with immunosuppression due to disease or receiving immunosuppressive treatment, either in the outpatient or inpatient setting. 

COVID-19 convalescent plasma needs to be ordered by a healthcare professional from a blood bank. If high-titer convalescent plasma is not available locally, your healthcare provider may be able to work with the local blood center to obtain it through the Blood Center of America. Two additional resources for learning about CCP and to help physicians order CCP for their patients are: USCovidPlasma.org and CCPP19.org.

The National Institutes of Health expert panel responsible for developing COVID-19 treatment guidelines has reviewed results from many studies, clinical trials and analyses on vitamin D. At this time, there is insufficient evidence to recommend either for or against the use of vitamin D for the prevention or treatment of COVID-19.

Most of the current studies have significant limitations—such as very small numbers of enrolled patients, lack of consistency in the types of patients studied (for example, with a range of COVID-19 severities), or use of many different medications simultaneously that can alter individual outcomes. 

Some observational studies (these types of studies cannot determine whether a medication can cause, prevent or treat an illness) suggest that low vitamin D levels can increase the risk of COVID infection or COVID-related death, but there is no clear evidence that taking vitamin D protects against infection or death. 

LLS encourages patients to talk with their healthcare team about their vitamin D levels and whether they should take vitamin D supplements. 

With the end of the public health emergency declaration, free treatment is not as widely available as it once was. However, the federal government has set up a Test to Treat initiative to help people get access to COVID-19 treatments at little to no cost. To find locations, go to this site and click the green “Find Locations” button.

LLS is invested in the work of world-class researchers across the globe to provide answers about how COVID-19 and COVID-19 vaccines impact blood cancer patients. For example, LLS-funded researchers are looking at how the course of COVID illness differs in immunocompromised blood cancer patients and whether they would benefit from targeted prevention and treatment options compared to those with normal immune systems. 

Because blood cancer patients were not included in the clinical studies leading to authorization of COVID-19 vaccines, LLS is focused on funding research to understand how vaccines work in people with all types of blood cancer. LLS is helping to answer questions such as: Should blood cancer patients get their vaccines on a more compressed schedule? How does antibody response and activation of disease-fighting T-cells differ in people with different types of cancer after vaccination? You can read about current LLS grants for COVID-19 and other research topics here.
 

LLS is doing its part by ensuring blood cancer patients’ interests are being heard by policymakers involved in the country’s vaccine rollout. A summary of our efforts include the following:

White House

LLS – along with other partner organizations –communicates to the Biden administration the strategies we believe will improve access to the vaccine. We’re also in touch with policymakers in state government.

Vaccine Requirements

Some blood cancer patients won’t produce COVID-19 antibodies even after receiving all COVID-19 vaccine doses, making it particularly important for those around them to be vaccinated. Public health measures like vaccine requirements play an important role in reducing the risk of COVID-19 to cancer patients, cancer survivors, and other immunocompromised people. LLS supports proven public health strategies like vaccine requirements, and it opposes policies that undermine vaccine requirements.
 

In response to concerns about access barriers some immigrants are facing regarding documentation requests prior to receiving COVID-19 vaccination and individuals inappropriately being sent bills for COVID-19 vaccine fees, Health Resources & Services Administration (HRSA) developed two fact sheets to help both patients and providers better understand their rights, which are available in English and Spanish.

You may or may not have out-of-pocket costs if you get tested for COVID-19 or if you need medicines or other care to treat it. You’ll need to check with your health insurance company about coverage. Here are some tips and resources to get you started:

• Call the toll-free number on the back of your insurance card
• Read about Medicare coverage of coronavirus-related needs