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COVID-19 VACCINES FAQ FOR PATIENTS AND CAREGIVERS

Dr. Gwen

Message from LLS Chief Medical Officer, Gwen Nichols


The Leukemia & Lymphoma Society (LLS) hears from blood cancer patients and caregivers each day about the profound effects of the pandemic on their cancer care and daily lives, including questions about COVID-19 vaccines and how well they work for people with blood cancer. 


As you continue to navigate your cancer care during these challenging times, LLS offers a wide array of free education and support that can help. LLS Information Specialists – highly trained oncology professionals – can be contacted here.


Last updated 11/30/2021


FAQ topics include:

  • 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 authorizations 
  • Vaccine side effects and safety
  • Staying safe after vaccination 
  • Prevention or treatment of COVID-19
  • LLS COVID-19 programs and resources

LATEST UPDATES
As of November 2, 2021, the Pfizer COVID-19 vaccine is recommended for children ages 5-11 years. Parents should call their child’s pediatrician or other healthcare provider, the local public health department or go to Vaccines.gov to find locations offering the Pfizer COVID vaccine for children ages 5-11.


The table below provides a snapshot of COVID-19 vaccination recommendations in people with moderately to severely compromised immune systems, which include blood cancer patients and survivors. 

COVID GRAPHIC

Please consult with your doctor about the timing and type of your COVID-19 vaccine doses.

COVID-19 ILLNESS IN PEOPLE WITH BLOOD CANCER AND SURVIVORS


As a blood cancer patient or survivor, am I at greater risk of severe COVID?
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 themselves 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.


I am a blood cancer patient undergoing active chemotherapy. Am I more prone to COVID-19 infection?
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.


I am a lymphoma patient on rituximab (Rituxan) or obinutuzumab (Gazyva). Am I at higher risk for severe COVID?
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


Should blood cancer patients and survivors get vaccinated against COVID-19?
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.


What does it mean to “get vaccinated, act unvaccinated?”
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. 


I am a cancer patient who has received lymphocyte-depleting therapy (e.g., rituximab, blinatumomab, anti-thymocyte globulin, alemtuzumab, etc.). When should I get vaccinated?
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.


I am a lymphoma patient on rituximab (Rituxan) or obinutuzumab (Gazyva). Will the COVID-19 vaccine still be effective for me?
Certain lymphoma therapies, particularly rituximab and obinutuzumab are known to 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 protection. However, patients should consider themselves still at risk and continue remaining vigilant even after vaccination. Please consult your healthcare provider with any questions and do not discontinue therapy without speaking to your healthcare team. 


I am a CLL patient who has tested positive for COVID-19. Should I continue treatment with BTK inhibitors (BTKis) including ibrutinib and acalabrutinib?
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.


Should COVID-19 vaccines be administered to hematopoietic stem cell transplant (HCT) and CAR T cell recipients?
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. 


And even after vaccination, LLS recommends that you continue to follow all safety precautions.

 
QUESTIONS ABOUT VACCINE EFFECTIVENESS


Are the COVID-19 vaccines effective for blood cancer patients?
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. 


Is a third COVID-19 vaccine dose beneficial for patients with blood cancer? 
Yes. A study published by LLS in the journal Cancer Cell showed that most blood cancer patients benefit from a third COVID-19 vaccine dose as part of the primary vaccine series. However, it is important to note that some blood cancer patients will not mount a full antibody response even after a third dose, so it is important to continue taking other precautions like wearing a mask and social distancing.


Should patients with blood cancer get a booster vaccine dose?
Yes. The CDC considerations for use of a COVID-19 vaccine booster dose include a booster (fourth) vaccine dose  for blood cancer patients six months after they complete their primary three-dose series. Almost all blood cancer patients and many survivors should consider themselves in the category of immunocompromised individuals. For more information about who needs a booster dose of the COVID-19 vaccine, click here


Are the COVID-19 vaccines effective in protecting against the Delta variant? 
While still highly effective against the delta variant, the available COVID-19 vaccines may offer less protection than against the original strain of the virus. However, promising data from Israel found that the Pfizer vaccine is 94% effective at preventing severe illness from the delta variant. Separately, an analysis released by Public Health England found that two doses of the Pfizer vaccine or two doses of the AstraZeneca vaccine were over 90% effective against hospitalization from the delta variant. 


The risk of serious illness from any COVID-19 strain is high for people with blood cancer, so unless you have a true medical contraindication for the vaccine, which is very rare, we encourage you to get vaccinated. We also urge blood cancer patients to continue taking other precautions, like wearing a mask, social distancing and avoiding crowds, as an extra layer of protection.


I am a blood cancer patient who has been fully vaccinated and have a negative antibody response. What does this mean for me and what precautions should I be taking?
Some patients may have a diminished antibody response, due to their type of blood cancer diagnosis and the type of treatment received. This does NOT mean that vaccination is futile.


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.


Should I be tested for antibodies to determine the effectiveness of the vaccine?
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.

 
How do these new vaccines work?
All vaccines have the same goal: to get the body to develop protective antibodies against a disease without us having to get sick. The Pfizer and Moderna vaccines both use messenger RNA (mRNA) to instruct cells in the body to build viral proteins. In this case, the cells learn how 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 spike protein found on the surface of the coronavirus.


All three vaccines are designed to 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 have become available is truly remarkable, but they are based on decades of rigorous and thoroughly reviewed research.


VACCINE ELIGIBILITY, TIMING AND AUTHORIZATIONS


What COVID-19 vaccines have been authorized or approved?
The Pfizer-BioNTech COVID-19 vaccine, now known by the brand name Comirnaty, has been approved by the FDA. Moderna and Johnson & Johnson vaccines continue to be available under a special FDA emergency use authorization. Blood cancer patients should continue to get vaccinated as recommended with any of these vaccines.


Who is eligible to get vaccinated?
The Pfizer-BioNTech vaccine can be administered to anyone 5 years and older. The Moderna and Johnson & Johnson vaccines can be administered to anyone 18 years and older.


How do I know if I should have the extra dose that CDC now recommend?
CDC recommends three doses of either mRNA vaccine (Pfizer-BioNTech or Moderna) as the primary vaccination series for people with compromised immune systems, which includes most blood cancer patients and survivors. These people should also receive a booster dose six months after completing the primary three-dose series. 


Anyone who had the Johnson & Johnson vaccine should receive a booster dose two months later. 


Your booster dose can be with any FDA approved or authorized COVID-19 vaccine (Pfizer-BioNTech, Moderna, Johnson & Johnson).


What is the recommended timing for the third dose of the COVID-19 vaccine for people with blood cancer?
CDC recommends that the third dose of mRNA vaccine be given at least 28 days after the second dose of Pfizer-BioNTech or Moderna COVID-19 vaccine. For people who received the Johnson & Johnson vaccine, the second dose should be two months later.


Do I need to get the same brand of COVID-19 vaccine I got for my first two shots? 
For people who received either Pfizer-BioNTech or Moderna’s COVID-19 for their first two doses, a third dose of the same vaccine is preferred. If the same vaccine product is not available or is unknown, either mRNA COVID-19 vaccine product may be administered.


What should immunocompromised people who received the Johnson & Johnson vaccine do?
Everyone who received the Johnson & Johnson COVID-19 vaccine should receive a booster dose two months later. This can be with any FDA approved or authorized COVID-19 vaccine (Pfizer-BioNTech, Moderna, Johnson & Johnson).


When will a vaccine be available for children under 12 years old? What about children with cancer?
The Pfizer-BioNTech vaccine was authorized and recommended for children ages 5-11 years in early November 2021. Children this age get a smaller dose than children 12 years and older and adults, but they still get two doses 21 days apart. Parents should call their child’s pediatrician or other healthcare provider, the local public health department or go to Vaccines.gov to find locations offering the Pfizer COVID vaccine for children ages 5-11 years. 


Can I get a COVID-19 vaccine at the same time as other vaccines, like my annual flu shot?
CDC says 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. 


As a blood cancer patient or survivor, should I worry about when I get vaccinated relative to whether I am in a “watch and wait” period, am currently on treatment or have recently stopped treatment? 
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


Are COVID-19 vaccines safe for blood cancer patients?
All three vaccines were shown to be safe in clinical trials and more than 222 million Americans have received at least one vaccine dose so far. 


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


Clinical trials with more than 3,000 children 5-11 years of age found that the vaccines work and are safe for them. The side effects in these children are similar to adults: a sore arm, headache, and being tired or achy for a day or two.


Is the third COVID-19 vaccine safe for blood cancer patients?
We have no reason to think safety of the third dose or the booster dose will be an issue, and there have been no safety concerns seen in the small number of studies completed so far, including one from LLS.


I have experienced severe allergic reactions to vaccines or injectable drugs in the past. Can I still get the COVID-19 vaccine?
Severe allergy to specific components of the Pfizer-BioNTech, Moderna or Johnson & Johnson COVID-19 vaccines 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


I am a blood cancer patient who has been fully vaccinated. Can I stop wearing my mask and resume “normal” activities such as going to sporting events and concerts? 
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.


I am a blood cancer patient who is fully vaccinated against COVID-19. Can I resume travel?
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.


Once I get the third COVID-19 dose and my booster, am I safe to resume normal activities? 
Even after receiving all recommended COVID-19 vaccine doses, blood cancer patients should continue taking other precautions including mask wearing, frequent handwashing, and avoiding poorly ventilated spaces as an extra layer of protection. 


What do I tell my friends and family that do not understand why I need to be cautious even though I am fully vaccinated? 
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. 


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


What is a monoclonal antibody? 
When you come in contact with an infection, including COVID-19, your body naturally makes different antibodies to help fight off the infection. Vaccines are designed to help you develop these same antibodies before you come in contact with COVID-19 and get sick. 


Monoclonal antibodies are a single type of antibody made in a laboratory either to fight the infection, or in the case of Rituximab, to fight malignant cells. They are administered to patients through an intravenous infusion. There are now single antibodies and antibody “cocktails” (combinations) that can be to given to patients for an immediate antibody boost against the virus that causes COVID-19. Because these are “ready-made” antibodies, they can 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.


Are there any approved monoclonal antibody treatments for COVID-19? 
Three monoclonal antibody treatments have been granted emergency use authorization 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.


Two of the treatments are also authorized to help prevent COVID-19 illness in people who have been exposed to the COVID-19 virus and who are at high-risk of severe disease.


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.


How are monoclonal antibody treatments given?
Monoclonal antibody treatments can be administered via intravenous or subcutaneous infusions 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.


COVID-19 PROGRAMS AND RESOURCES


How is LLS helping the blood cancer community learn more about COVID vaccines?
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.


What is LLS doing to help blood cancer patients gain access to COVID-19 vaccines?
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 – 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.


Vaccine Requirements
Up to 1 in 4 blood cancer patients won’t produce COVID-19 antibodies after vaccination, 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.


Are there resources for immigrants who face barriers to getting vaccinated?
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.


How can I get assistance signing up for my COVID-19 vaccination?
You can check with your local Public Health Department for availability and distribution locations in your area and how to make an appointment. The CDC also has an online VaccineFinder “Where to go” resource.


Does health insurance cover COVID-19 testing and care?
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: