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COVID-19 Resources and FAQs

The COVID-19 pandemic created additional challenges and concerns for blood cancer patients and caregivers, and we’re here to help. Below, you’ll find an overview of The Leukemia and Lymphoma Society’s (LLS’s) COVID-19 resources, frequently asked questions (FAQs), and news and information specifically developed to meet the unique needs of people with leukemia, lymphoma, myeloma, or other blood cancers.   
 
We conduct our own COVID-19 research at LLS, while also providing study support to institutions that produce important data on how the COVID-19 virus and vaccines affect people with blood cancer. You’ll find the results of some of that work below, along with information on how to enroll in a future study. 
 
Patients who have specific questions or concerns should, as always, speak directly with their oncologist and care team.  
 

Gwen Nichols, MD, LLS Chief Medical Officer

COVID-19 Frequently Asked Questions (FAQs)

(Information updated regularly based on CDC and FDA information and guidance.)

LLS has been advocating for vaccination policies that consider and serve the unique needs of blood cancer patients since the beginning of the pandemic. Here, you’ll find the latest information on COVID-19, vaccines, and other prevention strategies to help people with blood cancer and survivors protect themselves. 

LATEST UPDATES

Individuals age 6 years and older with moderately to severely compromised immune systems, including blood cancer patients, may receive an additional dose of bivalent COVID-19 vaccine at least 2 months following their first dose. They may receive additional bivalent doses “at the discretion of, and at intervals determined by, their healthcare provider,” according to the FDA. 

COVID-19 ILLNESS IN PEOPLE WITH BLOOD CANCER AND SURVIVORS

Overall, blood cancer patients are at risk of more severe COVID outcomes—including hospitalization and death, but the risk is not the same across all types of blood cancer. LLS recommends that blood cancer patients and survivors protect themselves by getting vaccinated and encouraging those around them to get vaccinated as well. They should also continue to take other preventive precautions such as wearing masks, social distancing, hand washing and avoiding crowds and poorly ventilated indoor spaces.

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.

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.

COVID-19 VACCINATION FOR BLOOD CANCER PATIENTS AND SURVIVORS

Yes! COVID-19 vaccines are safe and offer protection to the majority of blood cancer patients and survivors. However, since not everyone will get full protection, LLS recommends that blood cancer patients and survivors get vaccinated plus layer on additional protections like wearing masks and social distancing. 

The risk of serious illness from COVID-19 is high for people with blood cancer, so unless you have a true medical contraindication for the vaccine, which is very rare, LLS encourages you to stay up to date with COVID-19 (and all other) vaccines.

The FDA has severely limited use of the J&J COVID-19 vaccine because of an increased, but still rare risk of a blood clot syndrome that occurs in approximately 3 per million doses of the vaccine. Otherwise, the FDA and the CDC state no preferences among Pfizer-BioNtech, Moderna and Novavax COVID-19 vaccines for people with or without immunocompromising conditions. However, current recommendations are to receive at least one bivalent vaccine, which is only made by Pfizer-BioNTech and Moderna.

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 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 clinical team is best positioned to determine a need for revaccination and appropriate timing of revaccination.

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.

HSCT or CAR T-cell recipients are often immunosuppressed for months following treatment due to maintenance therapies and immunosuppressive drugs, among other factors. Based on current evidence, COVID-19 vaccines could be offered as early as three months following HSCT or CAR T-cell therapies, although their effectiveness may be reduced compared to results in general populations.

It is very important to follow the vaccination schedule recommended by your healthcare team, and in the case of HSCT, your transplant team. Transplant teams in particular are very knowledgeable about when and how to go ahead with re-immunization following transplant.

And even after vaccination, LLS recommends that you continue to follow additional safety precautions, like masking. 

QUESTIONS ABOUT VACCINE EFFECTIVENESS

COVID-19 vaccines offer at least some protection to the majority of blood cancer patients. The LLS National Patient Registry has shown that immune response to mRNA vaccination varies based on a patient’s type of blood cancer and treatment received. That’s why LLS recommends that all blood cancer patients and survivors get vaccinated, act unvaccinated.

Yes! The updated (bivalent) vaccine is designed to give better protection against currently circulating COVID-19 variants. Two recent studies, one in the New England Journal of Medicine (NEJM) and the other in the CDC Weekly Report, report positive news about how the bivalent vaccine is performing as new COVID-19 variants emerge.

The first study reported that bivalent mRNA vaccines are significantly better than monovalent mRNA vaccines at protecting against severe illness, hospitalization and death from COVID-19. The second study showed that the bivalent vaccine also reduced the likelihood of getting COVID-19 even as circulating virus strains changed.

It is important to note that these studies were not completed in patients with blood cancer or other conditions that can suppress the immune systems. LLS encourages blood cancer patients to get all COVID-19 vaccines as recommended to maintain and boost their protection. Because blood cancer patients, especially those with B-cell malignancies that weaken the immune system, may have a suboptimal response to vaccines, they should continue to take additional precautions even when fully vaccinated, including masking and avoiding crowded indoor spaces.

The FDA has indicated that it is working with manufacturers to update COVID-19 vaccines periodically, much like influenza vaccines are updated yearly, to keep up with changes in circulating viruses. It is likely that the next vaccine update will happen in the Fall of 2023.

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.

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 designed to attack the COVID-19 virus.

If you are an existing participant in the Registry and have additional questions about your antibody tests, please visit our COVID Study Frequently Asked Questions (FAQ) page.

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 does not eliminate your risk of a COVID-19 breakthrough infection completely. 

All vaccines have the same goal: 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 cells in the body to make the so-called “spike protein” found on the surface of the COVID-19 virus. The Johnson & Johnson COVID-19 vaccine uses genetic material to help train your immune system to recognize and respond to the spike protein. The Novavax vaccine includes harmless fragments of COVID-19 to trigger an immune response. 

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

VACCINE ELIGIBILITY, TIMING AND AUTHORIZATIONS

The Pfizer-BioNTech COVID-19 vaccine (Comirnaty) and the Moderna COVID-19 vaccine (Spikevax) are FDA approved.The Novavax vaccine is authorized for use by the FDA. The Johnson & Johnson vaccine is also authorized by the FDA, but it is no longer recommended.

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

The U.S. Food and Drug Administration has severely limited use of the J&J COVID-19 vaccine because of an increased, but still rare risk of a blood clot syndrome that occurs in approximately 3 per million doses of the vaccine. Officials have limited use of the J&J vaccine because there are other safer options. J&J may be given to adults 18 and older who either cannot or will not receive other types of vaccine and would otherwise go unvaccinated.

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: 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 bivalent doses are right for them. 

As of April 19, 2023, vaccine dosing recommendations have been simplified for everyone age 6 years and older. People 6 and older should receive one bivalent COVID-19 vaccine (bivalent mRNA vaccines are made by Pfizer-BioNTech and Moderna). Anyone who cannot or will not receive an mRNA vaccine can receive the two-dose Novavax primary vaccine series, however, for optimal protection a bivalent vaccine is still recommended two months after completion of the two-dose Novavax series. 

For children under age 6, who still require multiple doses in their primary series, the same brand is preferred. If the same vaccine product is not available or is unknown, either mRNA COVID-19 vaccine (Pfizer-BioNTech, Moderna) may be administered. 

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 limbs, or if in the same limb, 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. 

VACCINE SIDE EFFECTS AND SAFETY

Nearly 700 million COVID-19 vaccine doses have been administered in the United States including to more than 31 million children.

LLS collected real world data from blood cancer patients and survivors through the LLS National Patient Registry. We found that the vaccine side effect profile is very similar in blood cancer patients and survivors compared to the general public. Read more about the results here.

The U.S. FDA has severely limited use of the J&J COVID-19 vaccine because of an increased, but still rare risk of a blood clot syndrome that occurs in approximately 3 per every million doses of the vaccine administered. Clinicals trials showed an increased risk of myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the tissue surrounding the heart) following administration of Novavax COVID-19 vaccine, but these events were exceptionally rare and there was insufficient evidence to conclude that the vaccine caused them.

Severe allergy to specific components of any COVID-19 vaccines are 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 health care team to determine how to follow up if you have post-vaccine lymph node enlargement.

STAYING SAFE AFTER VACCINATION 

COVID-19, RSV and the flu are all respiratory viruses. While there are differences in how they spread, the precautions common in the early days of COVID can help protect against all three. This includes social distancing, masking, frequent handwashing, disinfecting surfaces and avoiding others when they are sick.

COVID spreads primarily through sneezing, coughing and expelling respiratory droplets, making masks and social distancing extremely important in stopping its transmission. RSV spreads much more through contaminated surfaces, making handwashing and cleaning surfaces more critical with RSV than with COVID. Flu is somewhere in the middle—it can spread through respiratory droplets from sneezing and coughing, but also from touching contaminated surfaces and then touching your mouth, nose or eyes.

The most important thing each one of us can do is get our COVID and influenza vaccines as soon as we are eligible. COVID and influenza vaccines can be given at the same visit, either in different arms or at least 1 inch apart in the same arm. There is no vaccine currently to protect against RSV. LLS strongly encourages blood cancer patients and survivors to get vaccinated (and encourage vaccination in those around them), wear masks in indoor settings and crowded outdoor events, wash hands frequently and disinfect surfaces—and even so, avoid touching your face unless you washed your hand very recently.

Even when fully vaccinated against COVID-19, CDC and LLS recommend that blood cancer patients and survivors should continue wearing a mask and taking other 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. While all of us are anxious to get back to normal, 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. Always continue to social distance, wear a mask, wash your hand frequently, and avoid crowds and poorly ventilated indoor spaces.

While vaccines offer at least some protection to most blood cancer patients, some will not get optimal protection from the vaccines 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.

TREATMENT AND PREVENTION OF COVID-19

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.

Not at this time. A monoclonal antibody called Evusheld was authorized to help prevent COVID-19 infection in people who either cannot be vaccinated or who are not expected to mount an adequate immune response to vaccination. However, on January 26, 2023, the FDA stated that Evusheld is no longer authorized for use until further notice because it is not active against currently circulating COVID-19 strains.

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

Yes, you will need a prescription to receive any COVID-19 treatment. 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 test positive or have COVID-19 symptoms as these medications are most effective when started early.

COVID-19 rebound has been reported to occur in a small percentage of 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. On May 24, CDC reported no serious disease in patients who have rebounded after treatment with Paxlovid and has made no changes to this report in the months since.

Paxlovid is one of the most effective treatments available for people with mild-to-moderate COVID; it is almost 90% effective at preventing hospitalization. 

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 safe 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.

When you come in contact with an infection, including COVID-19, your body naturally makes antibodies to help fight off the infection. Vaccines are designed to help you develop these antibodies before you come in contact with COVID-19 and get sick. Monoclonal antibodies are made in a laboratory and are given as an infusion to add another layer of defense against COVID-19. As of January 26, 2023, there are no monoclonal antibodies authorized for use in the U.S. to prevent or treat COVID-19 because they are not effective against currently circulating strains. 

The maker of Evusheld and others are working to develop newer antibody treatments to provide better protection against the evolving COVID-19 strains. There is not clear timing yet for when they will be available.

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 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. For example, 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 (for more information https://bca.coop/covid-19-convalescent-plasma-ccp/ or via email: covidplasma@bca.coop). 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. 

Join the LLS National Patient Registry

The LLS National Patient Registry, a project of the Michael J. Garil Patient Data Collective, is a unique opportunity for blood cancer patients to help us collect scientific data on how COVID-19 and COVID-19 vaccines affect them.  

Find out more.