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COVID-19 VACCINES FAQ FOR PATIENTS AND CAREGIVERS

Get Vaccinated, Act Unvaccinated

By “acting unvaccinated” we mean that blood cancer patients who have been fully vaccinated against COVID-19 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. The CDC recently revised its guidance on mask wearing and is now recommending that some fully vaccinated people wear make indoors if they live in areas with significant or high spread.

LLS has reported data from more than 1,400 blood cancer patients enrolled in its LLS National Patient Registry showing that up to 25% of blood cancer patients produce no antibodies against COVID-19 more than two weeks after their final vaccination. These findings are consistent with earlier data published in the scientific journal, Blood suggesting that mRNA-based COVID-19 vaccines may offer less protection for people with certain blood cancers. See our statement here.

Although some patients with hematologic malignancies will not mount a full antibody response compared to healthy individuals, vaccines are safe and offer protection to the majority of blood cancer patients.

IMPORTANT UPDATES
 
On July 30, 2021, the FDA granted emergency use authorization (EUA) to the antibody cocktail, REGEN-COV, as a preventative measure for those who have been exposed to COVID-19 and who are at high risk to progress to a severe case because they are not fully vaccinated or are not expected to mount an adequate antibody response to vaccination. In addition, the EUA allows for monthly administration of REGEN-COV in people aged 12 and older who require repeat dosing for ongoing exposure.
 
Blood cancer patients should see their doctor immediately if they have been exposed to COVID. If you test positive, or even if you do not but are at high risk, your doctor should be able to assist you with obtaining this antibody cocktail to help keep you from getting sick. 
 

Gwen

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.

LLS Chief Medical Officer, Gwen Nichols, MD, is addressing FAQs from blood cancer patients and caregivers based on what we know right now. We encourage blood cancer patients, parents of patients, and caregivers to get vaccinated unless they have a true medical contraindication to the vaccines.

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 vaccine. 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 8/2/2021

QUESTIONS FROM BLOOD CANCER PATIENTS WHO HAVE BEEN VACCINATED

As a blood cancer patient, now that I’m vaccinated, can I resume “normal” activities such as going to sporting events and concerts?

Blood cancer patients who have been fully vaccinated against COVID-19 should continue to take preventive measures such as wearing masks, social distancing, handwashing, 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 COVID-19 infections after vaccination compared to the general public.

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?

We urge everyone to share the results of their antibody tests with their physicians, but especially those whose spike antibody test is negative. You should also continue following prevention precautions (mask-wearing, social distancing, handwashing, and avoiding crowds and poorly ventilated indoor spaces), and encourage those around you to get vaccinated for their own protection and yours.

Some patients may have a diminished antibody response, due to their type of blood cancer diagnosis and the type of treatment they have 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, a project of the Michael J. Garil Patient Data Collective. We will be sharing findings from these research studies with patients and the medical community and have already shared preliminary safety data.

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 patients with blood cancer consider a booster shot?

There are ongoing clinical trials evaluating whether people with blood cancer could benefit from booster doses. We need these trials to understand if booster doses are safe and effective. It is important for patients to enroll in trials rather than getting boosters on their own. Ideally, patients should be part of a clinical trial or monitored by their doctor if they get a booster shot. However, these clinical trials are currently very limited and not widely available for enrollment. We will be monitoring and updating this Q&A as more trials open.

I read about a booster dose trial that seemed to work. Doesn’t that mean it’s safe?

A third booster shot was evaluated in a small number (30) of organ transplant patients. Most (24 of the 30) did not have an antibody response after two vaccine doses. After the third dose, 12 had a “high-positive” antibody response and 2 had a “low-positive” antibody response. It is important to note this is a very small study and more data is needed.

I am a blood cancer patient who has been fully vaccinated. Does this mean I can stop wearing my mask?

We recommend that you continue wearing a mask and taking other precautions to avoid infection. While the CDC’s latest guidance says that fully vaccinated people can resume activities without wearing a mask, they note that if you have a condition or are taking medication that weakens your immune system, you should continue taking all precautions.

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

While travel restrictions due to COVID-19 are slowly being lifted and the CDC updated its guidelines for fully vaccinated individuals traveling domestically, 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, if you are a cancer patient, survivor or caregiver, 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.

QUESTIONS ABOUT VACCINE AVAILABILITY AND ACCESS

What COVID-19 vaccines have been authorized or approved?

There are currently three vaccines authorized by the FDA in the US to protect people against COVID-19. They are the Pfizer-BioNTech, Moderna, and Janssen (Johnson & Johnson) vaccines.

Blood cancer patients are among those who are at increased risk of developing more severe illness and dying from COVID-19. We encourage blood cancer patients to get vaccinated unless they have a true medical contraindication to the vaccines. Because the vaccines may not work fully in all blood cancer patients, we also recommend continuing to follow all infection prevention measures as an extra layer of protection.

Who is eligible to get vaccinated?

The Pfizer-BioNTech vaccine is authorized for use in anyone 12 and older, while the Moderna and Johnson & Johnson vaccines are authorized for anyone 18 and older. The vaccination schedule remains the same in children—two doses three weeks apart. LLS urges parents, guardians, and/or caregivers to talk with their child’s health care team as soon as possible to make a vaccination plan.

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

Pediatric clinical trials are currently underway for children under 12 years old and health officials expect results later this year. While vaccines may not be available for all children until early 2022, some may be eligible sooner, including those with high-risk conditions. It is a good idea to begin discussing vaccination plans with your child’s oncologist.

Will COVID-19 vaccines become an annual vaccine like the flu?

The CDC has confirmed that it will make a recommendation on booster shots after data from clinical trials is available. We will update this FAQ as we learn more from clinical trials that are underway. Anchor

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.

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

LLS’s Office of Public Policy 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 effort include the following:

White House

Only a national, comprehensive approach can address the range of challenges that have impeded access to COVID-19 vaccines. 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.

Advisory Committee on Immunization Practices (ACIP)

Under ACIP’s guidelines, cancer patients are high-priority for vaccination, falling under the “Phase 1c” designation. States are encouraged, but not required, to follow ACIP’s recommendations. Back in January, we shared our views with ACIP. We applauded the committee for the high-priority designation it gave blood cancer patients. But we also reminded its members just how important it is for them to follow emerging data specific to the risk of COVID-19 to blood cancer patients. In addition, we urged ACIP to advise states on streamlining vaccine registration processes and keeping those processes from being overly burdensome for patients.

QUESTIONS ABOUT VACCINE EFFICACY 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 182 million Americans have received at least one vaccine dose so far. Blood cancer patients undergoing or having completed treatment, as well as survivors may be offered vaccination against COVID-19 if they have no other contraindications to these vaccines.

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

In the meantime, more information keeps coming in about how dangerous the virus is for cancer patients—particularly those with blood cancer, so vaccination is very important. However, cancer and its treatment can affect how well a patient’s immune system responds to vaccines. While some patients may experience a decreased immune response to the vaccine, some protection is better than none and is important for reducing the risk or severity of COVID-19 to cancer patients. LLS encourages blood cancer patients to get vaccinated unless they have a true medical contraindication to the vaccines.

Even after vaccination, cancer patients should continue to follow good prevention practices as an extra layer of protection, such as wearing masks, social distancing, frequent hand washing, and avoiding crowds and poorly ventilated indoor spaces. They should also encourage those around them to get vaccinated for their own protection and to reduce the risk of transmitting the virus to them.

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

While there is no reason to believe vaccine safety will be different in cancer patients, important questions remain about how well these vaccines induce immunity in patients with blood cancer, particularly those undergoing treatment. Most experts agree that the risks of COVID-19 outweigh any risks of vaccination and that any protection is better than no protection.

But it is important to know that some cancer patients may not develop a full immune response due to their cancer or cancer treatment. That’s why it’s important for cancer patients to get vaccinated and to continue taking other preventative measures like hand washing, wearing masks, social distancing, and avoiding crowds and poorly ventilated indoor spaces, even after vaccination.

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. The best advice is to get vaccinated but to also continue taking other precautions, like wearing a mask, social distancing, and avoiding crowds, as an extra layer of protection.

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-BioNTech vaccine and two doses of the AstraZeneca vaccine were over 90 percent effective against hospitalization from the delta variant.

The risk of serious illness from COVID-19 is high for people with blood cancer, so unless you have a true medical contraindication, which is very rare, we encourage you to get vaccinated with whichever authorized COVID-19 vaccine is offered to you.

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 (855)-244-8493 or email LLSsupport@ciitizen.com.

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

Our researchers are gathering data to improve our understanding of how people with different blood cancers respond to COVID-19 and the vaccines so that vaccination strategies and timing can be tailored to maximize their protection. We will be sharing findings from these research studies with patients and the medical community and have already shared preliminary safety data.

It is also critical to expand clinical trials and to collect data that includes patients with immunosuppression, including blood cancer patients undergoing treatment.

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. All other severe allergic reactions, including anaphylaxis, to other vaccines or to any injectable therapy (e.g., intramuscular, intravenous, or subcutaneous) are a precaution, but not contraindication, to vaccination.

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.

LLS strongly encourages you to discuss any questions or concerns about the potential risks of vaccination with your healthcare provider.

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 a technology called 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. This is the first time this technology has been used for a vaccine. The Johnson & Johnson vaccine uses viral vector, which is a type of biological technology that has been used since the 1970’s. Similar to the mRNA vaccines, viral vector COVID-19 vaccines use genetic material to help train your immune system to recognize the spike protein found on the surface of the coronavirus and respond accordingly.

All three vaccines trigger an immune response, which produces antibodies, helping the body recognize and 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.

I read about a U.K. study which found that the Pfizer COVID-19 vaccine provides less protection in cancer patients after a single dose. Should I still get the vaccine as a blood cancer patient?

This study also showed that cancer patients had a much better immune response to the second vaccine dose. The U.K. is delaying the second dose, but the U.S. is following the recommended dosing intervals—21 days for the Pfizer-BioNTech vaccine and 28 days for the Moderna vaccine (the Johnson & Johnson vaccine is given as a single dose). But this study does demonstrate what many expected to be the case—some blood cancer patients will not be fully protected by vaccination.

However, blood cancer patients are at risk for more severe COVID-19 outcomes, including more prolonged periods of illness and higher death rates, so they must take every measure to protect their health. LLS encourages blood cancer patients to get vaccinated but act unvaccinated by maintaining recommended preventative measures like wearing a mask, social distancing, handwashing, and avoiding crowds and poorly ventilated indoor spaces, even after vaccination.

Full statement available here.

QUESTIONS ABOUT COVID-19 AND ITS IMPACT ON BLOOD CANCER PATIENTS

Does COVID-19 produce different symptoms in cancer patients than in other people?

Overall, the symptoms of COVID-19 are the same in cancer patients as the general population. One exception might be patients who are taking steroids or other medications to treat leukemia or lymphoma. These treatments can suppress fevers. As a result, patients with COVID-19 who are taking these types of medications may not register a fever — or as high a fever — as others with the infection.

I am a patient with chronic lymphocytic leukemia (CLL) or multiple myeloma (MM) who has read about studies suggesting that mRNA-based vaccines may offer less protection for people with certain blood cancers. Should I be concerned?

LLS has heard from blood cancer patients and caregivers who are concerned about new research suggesting that mRNA-based vaccines may offer less protection for people with certain blood cancers. The findings from the new research confirm what LLS and other experts expected: that certain types of blood cancer and blood cancer treatments could affect how strong of an immune response a person gets from the vaccine. This is why we recommend vaccination plus continuing preventative measure (wear a mask, social distance, avoid crowds, etc.) as an extra layer of protection.

How do I stay up to date on the latest developments about COVID-19?

Check this page often for the latest updates from LLS. You can also get answers to more frequently asked questions or learn more by visiting the pages of the Centers for Disease Control and Prevention (here) and by contacting your local Public Health Department. Additionally, The American Society of Hematology (ASH) has developed a series of frequently asked questions that are categorized by malignancy topic for patients with leukemia, lymphoma, multiple myeloma and myelodysplastic syndromes.

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:

I’m seeing several studies about how COVID-19 affects blood cancer patients. What are some of the key updates and takeaways?

Every day, the medical and scientific communities are learning more about how COVID-19 impacts blood cancer patients. In fact, the 62nd American Society of Hematology Annual Meeting in December dedicated a number of sessions to this topic.

Some of the key takeaways include:

I am a lymphoma or leukemia patient who has received the COVID-19 vaccine. Should I be tested for antibodies to determine the effectiveness of the vaccine?

Having antibodies to SARS-CoV-2, the virus that causes COVID-19, appears to offer some degree of protection from getting the virus and from having severe disease. For those patients who do not have antibodies or do not produce as robust an antibody response, we don’t yet know if you will be protected. There are other types of immunity which may provide protection. Immune cells known as T cells 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. After joining the Registry and consenting to share medical records, we are offering participants antibody testing before and after they get their COVID-19 vaccinations. We will be sharing findings from these blood draws with patients and the medical community.

QUESTIONS ABOUT COVID-19 & VACCINATION WHILE UNDERGOING BLOOD CANCER TREATMENT

I am a newly diagnosed blood cancer patient – should I get vaccinated for COVID-19 before treatment?

Since the situation for every person is different, we recommend discussing the timing of your COVID-19 vaccination with your oncologist. 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.

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 the clinical setting, 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 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 vaccine interim 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 lymphocyte reconstitution. 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?

According to data presented at the American Association for Cancer Research (AACR) COVID-19 and Cancer meeting, CD-20 targeting agents such as rituximab and obinutuzumab were tied to severe COVID-19 in lymphoma patients. Patients with lymphoma may develop immune deficiency due to particular features of their disease or due to their treatment regimen, which can lead to increased incidence and increased severity of infections.

Certain lymphoma therapies, particularly rituximab and obinutuzumab are known to impair antibody responses even after discontinuation. 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?

Recently published reports suggest a possible benefit from BTKis (ibrutinib and acalabrutinib) in people with severe COVID-19 infection. While controlled studies are needed to confirm those results, ASH’s current 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 efficacy 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 (wear a mask, social distance, avoid crowds, etc.) as an extra layer of protection).

QUESTIONS ABOUT MONOCLONAL ANTIBODIES

What is a monoclonal antibody?

When you come in contact with an infection, including COVID-19, your body naturally makes antibodies to fight it. You may make a number of different types of antibodies to help fight off the infection.  Vaccines are designed to help you develop these same antibodies without the risk of getting sick from the actual infection. 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) which can be to given to patients for an immediate antibody boost against the virus that causes COVID-19.

Are there any approved monoclonal antibody treatments for COVID-19?

Currently, twomonoclonal antibody (mAb) 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. The treatment must be given within the first 10 days of symptom onset and patients must not have been hospitalized.

Who is eligible for monoclonal antibody treatments?

Monoclonal antibody (mAb) 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 mAb treatment for mild-to-moderate COVID-19 in patients at “high risk of progression to severe disease.” The FDA define this as meeting at least one of the following criteria:

  • having chronic kidney disease, diabetes, or a suppressed immune system
  • being older than 65 years
  • being older than 55 years and having cardiovascular disease, hypertension, chronic obstructive pulmonary disease, or another chronic respiratory disease
  • being aged 12–17 years and having a BMI equal to or greater than the 85th percentile for one’s age and sex
  • sickle cell disease, heart disease, a neurodevelopmental disorder, medical-related technological dependence, asthma, or another chronic respiratory disease requiring daily medication

Currently, there are no clinical trials involving cancer patients for preventative mAb treatment that are actively recruiting. We will update this page with more information if this changes.