Message from LLS Chief Medical Officer, Gwen Nichols
As you continue to navigate your cancer care during these challenging times, The Leukemia & Lymphoma Society (LLS) offers a wide array of free education and support that can help. LLS Information Specialists – highly trained oncology professionals – can be contacted here.
This page is updated frequently based on guidance from the CDC and FDA. LLS cannot give medical advice and does not provide medical services. Patients and caregivers should address specific questions with their cancer care team.
Last updated May 6, 2022
FAQ topics include:
- Latest Updates
- COVID-19 illness in people with blood cancer and survivors
- COVID-19 vaccination for blood cancer patients and survivors
- Vaccine Effectiveness
- Vaccine eligibility, timing, and authorization
- Vaccine side effects and safety
- Staying safe after vaccination
- Prevention or treatment of COVID-19
- LLS COVID-19 programs and resources
Downloadable Resources from LLS
Two new Omicron variants, BA.4 and BA.5, are driving a spike in COVID cases in South Africa (where the variants were first identified). BA.4 and BA.5 are currently circulating at low levels in the United States, but the Department of Health and Human Services has classified them as “variants of concern.” This means that there is evidence that these variants are more transmissible and cause more severe disease (for example, a higher risk of hospitalization or death).
Laboratory analysis indicates that those who are vaccinated may have better protection against the BA.4 and BA.5 variants compared to unvaccinated individuals who were infected with COVID previously. While breakthrough infections may increase with these new variants for both groups, experts say vaccines should still offer protection against hospitalization and death.
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—Moderna and Pfizer mRNA vaccine. J&J may be given to adults 18 and older who either cannot or will not receive an mRNA vaccine and would otherwise go unvaccinated. Rare individuals who have received vaccines similar to J&J (adenoviral-based) have developed the syndrome typically within 10-16 days after vaccination. Therefore, those patients who have received the J&J vaccine in the distant past are not believed to be at risk of developing this complication.
A second COVID-19 booster dose is now available for certain immunocompromised people and anyone age 50 or older. Anyone in these groups who chooses to receive the second booster should wait at least four months from their first booster dose. LLS has created this COVID-19 Vaccination Schedule with additional details on timing and number of doses for immunocompromised patients, which includes blood cancer patients and most survivors.
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.
A study presented at the American Association for Cancer Research (AACR) COVID-19 and Cancer meeting showed no increased risk of getting COVID-19 among cancer patients on active chemotherapy treatment. With proper precautions in medical facilities, disruptions in lifesaving cancer treatment should be minimized during the COVID-19 pandemic. We encourage you to discuss any questions regarding your cancer care with your oncologist and healthcare team.
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.
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 get vaccinated.
According to CDC, “mRNA vaccines are preferred over the [Johnson & Johnson] COVID-19 vaccine for the prevention of COVID-19 for those 18 years of age and over." However, receiving any vaccine is better than being unvaccinated so those who are unable or unwilling to receive an mRNA vaccine will continue to have access to the J&J COVID-19 vaccine.
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. Please consult your healthcare team with any questions and do not discontinue therapy without speaking to your healthcare team.
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.
HCT 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 HCT 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 HCT, 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, though, that immune response to vaccination varies based on a patient’s type of cancer and treatment received. That’s why LLS recommends that all blood cancer patients and survivors get vaccinated, act unvaccinated.
Yes. A study published by LLS showed that most blood cancer patients benefit from a third mRNA COVID-19 vaccine dose (Pfizer or Moderna) as part of the primary vaccine series. However, since some blood cancer patients will not mount a full antibody response even after a third dose, it is important to continue taking other precautions like wearing a mask and social distancing. Blood cancer patients who received the J&J vaccine should get a second dose 28 days later. In both cases, booster doses are also recommended (see below).
Yes. Individuals with blood cancer who received either Pfizer or Moderna vaccines should get a booster (fourth) dose three months after they complete their primary three-dose series. They may also receive a second booster, or fifth dose four months later.
Individuals with blood cancer who received J&J vaccine should receive an mRNA vaccine dose (Pfizer or Moderna) 28 days later and a booster dose two months after that. They may also receive an additional booster dose four months later.
This LLS vaccine dosing chart help people with blood cancer determine how many COVID-19 vaccine doses they need, and when.
Research and development on new and updated vaccines is ongoing. In the meantime, current COVID-19 vaccines continue to protect against severe illness, hospitalization and death. However, breakthrough infections in people who are vaccinated are likely to occur. Those who are fully up to date with all recommended doses are least likely to develop serious illness.
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. Immune cells known as T cells may play a role in the ability of our immune system to protect us against COVID-19. This is one of the questions LLS is studying through the LLS National Patient Registry.
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 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 viral vector COVID-19 vaccine uses genetic material to help train your immune system to recognize and respond to the same spike protein.
All three vaccines prepare your body to trigger an immune response to fight infection if you are exposed to the actual virus. 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 Johnson & Johnson vaccine is available under a special FDA emergency use authorization.
The Pfizer-BioNTech vaccine can be administered to anyone 5 years and older.
The Moderna vaccine can be administered to anyone 18 years and older.
The Johnson & Johnson vaccine can be administered to anyone 18 years and older, though the Pfizer-BioNTech and Moderna vaccines are preferred.
Most blood cancer patients and survivors should follow the COVID-19 vaccination schedule for people who are moderately to severely immunocompromised. This schedule includes an extra vaccine dose as part of the primary series and earlier boosters. Patients should talk to their healthcare team if they are unsure of their risk.
Because the immune system is very complex, there is no simple answer to who is moderately to severely immunocompromised. This is why the CDC provides guidance and recommends that patients consult with their own cancer specialists to determine their risk.
LLS is aligned with Memorial Sloan Kettering Cancer Center’s definition, which considers all blood cancer patients to be moderately to severely immunocompromised. This includes anyone being treated for blood cancer or who has received cancer treatment in the past year.
It also includes anyone who 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) 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 the monoclonal antibody Evusheld and additional COVID-19 vaccines are right for them.
Anyone with a compromised immune system should also continue masking and social distancing even after vaccination.
If you received either Pfizer or Moderna vaccines, the same brand is preferred for all three primary series doses. If the same vaccine product is not available or is unknown, either mRNA COVID-19 vaccine (Pfizer, Moderna) may be administered. If you received the Johnson & Johnson vaccine, all additional doses should be with either Pfizer or Moderna vaccines.
Immunocompromised individuals who received the Johnson & Johnson COVID-19 vaccine should receive an additional vaccine dose at least 28 days later and a booster dose two months after that with either Pfizer or Moderna vaccines. They may also receive a second booster dose four months later.
Yes. COVID-19 and other vaccines may be given without regard to timing. This includes giving 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, we recommend discussing the timing of your COVID-19 vaccination with your healthcare team. Generally, it is best to vaccinate before treatment as the immune response to the vaccine may be impaired in patients receiving cancer 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
More than 250 million Americans have received at least one vaccine dose, with nearly 220 million fully vaccinated including more than 23 million children, and the vaccines appear very safe.
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.
Severe allergy to specific components of the Pfizer-BioNTech, Moderna or Johnson & Johnson COVID-19 vaccines 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 health care team to determine how to follow up if you have post-vaccine lymph node enlargement.
STAYING SAFE AFTER VACCINATION
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 patients may 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 FDA has approved or authorized several treatments for patients who are not in the hospital and have mild to moderate COVID-19, but who are increased risk of serious outcomes of the infection, such as blood cancer patients and survivors. These include monoclonal antibodies and antiviral medications. To be effective, treatments must be started as quickly as possible after a positive COVID-19 test or the onset of symptoms.
There is also one monoclonal antibody, called Evusheld, that can 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.
Yes, you will need a prescription to receive any COVID-19 treatment or prevention, including monoclonal antibodies and antiviral medications. 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.
LLS has heard from patients who are having difficulty accessing treatment and prevention because of uneven supply across the country. Federal officials distribute Evusheld, as well as monoclonal and antiviral treatments, to states according to their population. State officials then distribute that supply.
Patients can contact their local healthcare team or health department to inquire about availability in their area. In addition, this HHS locator can help patients find all COVID-19 therapeutics, while this locator is specifically designed to help locate doses of Evusheld.
Because availability can change quickly, LLS cannot guarantee the timeliness of the information in these external resources.
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 can be given as an infusion to add another layer of defense against COVID-19. Because these are “ready-made” antibodies, they can generally begin working in your body right away, while vaccines take time to work. However, they are not as long-lasting as the antibodies your body makes itself after vaccination.
Several monoclonal antibodies have been authorized by the FDA to treat mild to moderate COVID-19 in non-hospitalized patients who are high risk of progressing to severe disease, such as blood cancer patients and survivors, and others with weakened immune systems. However, recommendations for their use may change depending on their activity against currently circulating variants. LLS has developed this Monoclonal Antibody Therapy table with the latest information.
Monoclonal antibody treatments work best when given as soon after exposure or the onset of symptoms as possible. If you believe you have been exposed or if you have symptoms of COVID-19, you should contact your healthcare team as soon as possible
Yes, an antibody treatment called Evusheld is authorized for prevention of COVID-19 in certain adults and children ages 12 years or older. This antibody is not to be used in people who were recently exposed to the COVID-19 virus or who have tested positive. It is given as two injections, one immediately after the other. If Evusheld retains activity against future COVID virus variants, FDA will likely recommend repeat dosing for at-risk individuals. LLS has developed this Monoclonal Antibody Therapy table with the latest information about available therapies.
IMPORTANT NOTE: On February 24, 2022, the FDA changed the recommended dose of Evusheld. The dose level was increased to provide better protection against two new Omicron subvariants, BA.1 and BA.1.1. Patients who received Evusheld before this date should check with their healthcare provider about receiving an additional dose as soon as possible.
Antibody treatments are not a substitute for COVID-19 vaccination. Vaccines are the best defense against COVID-19 for most people, including blood cancer patients. However, Evusheld is an important new option for blood cancer patients who do not mount an adequate immune response to vaccination either because of their cancer type or its treatment (immune suppressing agents, like BTK inhibitors, anti-CD20 antibody treatments, certain CAR T-cell treatments). These patents should discuss this treatment with their healthcare team.
Monoclonal antibody treatments are administered via intravenous infusion or injection in specialized medical facilities. They work best when given as soon after exposure or the onset of symptoms as possible, so blood cancer patients and survivors should not delay in seeking care.
No. Anti-CD20 treatments such as rituximab are not expected to reduce the effectiveness of Evusheld. Rituximab, and other drugs like it, affect the immune system’s ability to generate its own antibodies, but will not affect the antibodies that a patient gets from an Evusheld infusion.
Protection starts quickly; likely within one hour of the injection. However, as with vaccines, breakthrough infection is possible. So even after receiving Evusheld, blood cancer patients should continue taking additional precautions like masking and social distancing for another layer of protection.
Medically, it does not matter where Evusheld is administered. However, while the drug itself is free, some sites will be charging an "administration fee." Please check with your healthcare provider and the administration site about any costs associated with receiving your additional dose.
Having an antibody test after receiving Evusheld is unlikely to provide any useful information. Since Evusheld is a direct infusion of antibodies, everyone who receives it would be expected to have detectable antibody levels, with antibodies expected to last about six months.
What is important to know is that while Evusheld has been shown to be effective in reducing the risk of COVID-19 and its severe outcomes, breakthrough infection is possible. In a large clinical trial in immunocompromised people that was completed before the omicron variant began circulating, Evusheld reduced the risk of having symptomatic COVID-19 by 77%, and none of the breakthrough cases were severe. Evusheld appears to maintain its activity against Omicron variants, but likely is less effective against them than earlier strains that were circulating during the clinical trial.
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 cell immune responses.
It is unlikely Evusheld and vaccines would interact in any way and make vaccine side effects worse. However, the FDA and the manufacturer are monitoring safety data closely. When possible, blood cancer patients should get vaccinated first. There is a waiting period of two weeks after vaccination before getting Evusheld.
LLS has been advocating on behalf of patients to ensure that policymakers at every level of the federal and state governments understand the unique challenges blood cancer patients face. LLS is urging the Administration and other regulatory bodies across public and private sectors to increase procurement and distribution of all monoclonal antibodies to help prevent COVID-19 infection and its worst outcomes in people with moderately to severely compromised immune systems, including blood cancer patients and survivors.
COVID-19 PROGRAMS AND RESOURCES
The LLS National Patient Registry provides a unique opportunity for blood cancer patients ages 18 and older to join LLS to increase scientific knowledge about how COVID-19 and COVID-19 vaccines affect them. Go to www.lls.org/registry to learn more. For further support, call (844) 696-7228 or email PACT@LLS.org
If you are an existing participant in the Registry and have additional questions about your antibody tests, please visit our COVID Study FAQ page.
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:
LLS – along with other partner organizations – is closely monitoring the Biden administration’s rollout process. We’ll communicate to the administration the strategies we believe will improve access to the vaccine, and we’ll update that guidance as the situation evolves. We’re also in touch with policymakers in state government.
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
- See Medicaid’s frequently asked questions about COVID-19
- Learn about coronavirus and your Marketplace health plan coverage