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COVID-19 VACCINES FAQ FOR PATIENTS AND CAREGIVERS

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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 vaccination and how well they work for people with blood cancer.

We understand that you may be experiencing uncertainty about the impact of COVID-19 on your cancer care and may have many questions about when to get your vaccines. As you continue to navigate your 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 10/21/2021

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

On October 20, 2021, the FDA expanded authorizations to allow booster shots of Moderna and Johnson & Johnson's COVID-19 vaccines and a "mix and match" approach to boosters. For example, a person originally vaccinated with Pfizer-BioNTech could receive a Moderna booster shot.

The LLS team regularly tracks clinical trials available to blood cancer patients, including COVID-19 trials. At this time, there are very limited COVID-19 vaccine trials available. At a recent LLS Research Now webinar, researchers from Einstein College of Medicine in New York City and Mayo Clinic in Minnesota mentioned two trials. One is studying a fourth dose of COVID-19 vaccine in blood cancer patients and the other is studying the use of convalescent plasma to prevent COVID-19 infection in those who are not protected from vaccination. We will update this page as we learn more.

COVID-19 ILLNESS IN PEOPLE WITH BLOOD CANCER AND SURVIVORS

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 have been tied to an increased risk of severe COVID-19 in lymphoma patients. Patients with lymphoma may develop immune deficiency due to particular features of their disease or due to treatment with these medications, which can lead to increased incidence and increased 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 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 they should not get vaccinated or that the vaccines will not offer them protection. 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 autologous HCT, allogeneic 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, the available 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.

If you are a HCT or CAR T cell patient, please discuss any questions regarding vaccination with your oncologist and healthcare team. And even after vaccination, 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.

Should patients with blood cancer get an additional vaccine dose?

Yes. The CDC COVID-19 vaccine recommendations include an additional vaccine dose (Pfizer of Moderna) for blood cancer patients. For immunocompromised individuals, CDC does not consider this a “booster” shot. Instead, the additional dose is a part of the primary vaccination series recommended specifically for people with moderate to severe compromise of their immune system. Almost all blood cancer patients and many survivors should consider themselves in the category of immunocompromised individuals. For more information about who needs an additional dose of the COVID-19 vaccine, click here.

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 an additional COVID-19 vaccine dose. 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.

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 vaccines use 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 trigger an immune response to fight infection if 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 12 and older. The Moderna and Johnson & Johnson vaccines can be administered to anyone 18 and older. 

How do I know if I should have the extra dose that CDC now recommend?

CDC recommends an additional dose of either mRNA vaccine (Pfizer-BioNTech or Moderna) for people with compromised immune systems, which includes most blood cancer patients and survivors.

What is the recommended timing for the additional dose of the COVID-19 vaccine for people with blood cancer?

CDC recommends that the additional dose of mRNA vaccine be given at least 28 days after the second dose of Pfizer-BioNTech or Moderna COVID-19 vaccine.

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 vaccine series, a third dose of the same mRNA 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?

According to the CDC, there is not enough data at this time to determine whether immunocompromised people who received the Johnson & Johnson COVID-19 vaccine should receive an additional dose of the same vaccine. We will update this page as we learn more.

When will a vaccine be available for children under 12 years old? What about children with cancer?

Children ages 5 to 11 may be able to start getting immunized by November, if health regulators authorize the shots. It is a good idea to begin discussing vaccination plans with your child’s oncologist or pediatrician.

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 216 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.

Is the third COVID-19 vaccine safe for blood cancer patients?

We have no reason to think safety 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 allergic to specific components of the Pfizer-BioNTech, Moderna or Johnson & Johnson COVID-19 vaccines is a contraindication to vaccination. Your specific risk should be discussed 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, am I safe to resume normal activities?

Even after receiving a third dose of the COVID-19 vaccine, blood cancer patients should still take 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?

Currently, two monoclonal antibody treatments—bamlanivimab and a combination of casirivimab and imdevimab—have been granted emergency use authorization by the FDA. These therapies can be administered to newly diagnosed COVID-19 patients (12 and older) who are at high risk for progressing to severe COVID-19, including patients with blood cancer. The treatment must be given within the first 10 days of symptom onset and patients must not have been hospitalized. If you believe you have been exposed, you should contact your healthcare team as soon as possible.

Who is eligible for monoclonal antibody treatments?

Monoclonal antibody treatments can only be administered via intravenous infusions in specialized medical facilities. They currently can only be given to patients with a documented COVID-19 infection. The FDA has authorized monoclonal antibody treatment for mild-to-moderate COVID-19 in patients at “high risk of progression to severe disease,” including many patients with blood cancer.  

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 age 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, 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 Centers for Disease Control (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: