We had a CLL Society Zoom session on vaccinations with Dr. Furman April 11.
He discourages getting the antibody & spike protein tests after the 2nd vaccination, except as part of a controlled clinical study, since he believes the results are not reliable predictors of immunity and protection against COVID-19.
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He does not want CLL patients to alter their viral safety behavior if they have a positive spike test, until we have data to show whether we have developed full immunity. The most important protection will be derived from the incidence of new infections falling in the community at large.
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Both Weill Cornell and the LLS are running studies with blood tests to gather the missing data. I have submitted blood samples for both studies.
Dr Furman believes we all should get vaccinated as soon as possible, because the vaccines will likely reduce the symptoms and reduce the risk of hospitalization & death. The vaccines studies looked at preventing all symptomatic illness. Having a mild case instead of a severe case is still a tremendous benefit. But he hopes that vaccines make the people with normal immune systems around us , more immune to the virus, so we won't get it from them.
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Dr Furman is most concerned about the exposure in indoor spaces that are not well ventilated. The greatest risk for infection is related to indoor exposures where virus can accumulate. Ordinary mask wearing and social distancing is not effective in a poorly ventilated areas. The greatest means for protecting against infection is being in a well-ventilated area.
He suggests wearing N95 masks and maintaining social distancing. But of course we cannot eat or drink without removing our mask, so those activities need to be outdoors or in well ventilated/filtered spaces.
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Air travel and subway travel is a challenge to maintain social distancing and wear N95 masks for extended periods of time.
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Here is the link to the video on the CLL Society page:
Disclaimer: It is yet undetermined what level of antibody to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease. Studies are underway to answer this question and will provide valuable insights into the correlation between protection from vaccination and antibody levels. It is important to note that LLS will not provide an interpretation of your test results. The results should always be assessed in conjunction with your medical history, clinical examination, and other findings. You should contact your healthcare provider for additional guidance on how to interpret your test results.
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Len (with edits suggested by Dr. Furman on April 18)
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Thanks Len!My hematologist is saying the same thing. However, I am doing the LLS study. I don't plan on taking any risky behaviors antibodies or not.
There is an interesting article in the NY Times about this same topic, however, it states we should be tested for antibodies. I guess I'm just a little frustrated as all this contradictory information feels like it did last year. Basically, they don't know if we will or won't be protected by the vaccine. However, I get my 2nd shot tomorrow and plan on using safe behaviors. I do hope we get some immune protection from the vaccine. If not, I hope the powers that be have a secondary choice for us, that is readily available, just in case.
Very important points Len, thanks for sharing. It's the information I have been given by my Haem Team.We all must remain infection "of all kind" vigilant. Always.
I'm also on the Birmingham study.I'm also doing a test via a long term study/survey group Inthe UK by one of the main universities and they asked if I'd like a test to be sent out.
I've received the test and will do it shortly, I only had my second AZ jab yesterday so wondering about deferring it a week or two.
On this study I will be notified of my result unlike the Birmingham study I'm also doing.
I was tested (and posted the results) but I haven’t changed my behaviors at all - masking, social distancing, no indoor restaurants etc It never occurred to me to even consider it
re "Air travel and subway travel is a challenge to maintain social distancing and wear N95 masks for extended periods of time." Remember to bring a normal paper mask for airline travel because wearing only the N95 with a ventilator is not allowed, however if you wear a N95 with ventilator, and put the paper mask over the ventilator part, they will allow you to board the plane.
Rick Furman is a rock star and it was a valuable presentation. I did the LLS study, some antibodies were formed, but I did it to provide research data, not to change my behavior. I'm afraid we are not out of the woods, and fear for those who feel that vaccination of a CLL patient means you can play unmasked with your unvaccinated grandkids. I sing in a UK virtual choir with thousands of others (Stay at Home Choir) and am amazed at how .. (what is the word) .. naive? .. some in the UK are about wanting to be back with their friends in the pub. IMHO taking off your mask to lift a pint in an enclosed space is not a great idea. But then, the pub doesn't have the same role in the US. Hope someone can explain down the road on that.
I agree that people have forgotten all the restrictions. Watching the news and its clear that even outside they are huddled together. Time will tell.What worries me is if the vaccine doesnt protect us from a new variant. There is an Indian one now.
I have been for a walk this afternoon. Not far due to mobility but I want to see people. The sun was shining and things have changed. No masks outdoors. The park was full of families and tables outside were full.
I will go out but need to remember the basics. I would like to go away in May when hotels are open. I think numbers will rise and it will be unlikely. I have my 2nd jab on Wednesday but like everyone I wont assume it will work. Anne uk
We watch a 20 minute show in the US on BritBox, "Good Morning Britain", (which we call the "silly" show), and it seems crazy that people are obsessed with booking their "holidays" in Europe, which they were happy to leave and where COVID is running rampant because of low vaccination supplies. I know it's time to find a way of streaming a BBC morning or evening show to see what's happening in your 'hood,.
Sadly we dont have the beautiful med and places like Venice and Florence as an example but we dont want to be controlled by the EU. The Brits behave badly wherever they go. Sandwiched on beaches and leaving litter spread everywhere. Luckily we arent all like that.
I imagine Europe all have to agree on vaccinations. They dont want AstraZenneca.
Whilst they argued about who to give it to and then blood clot worries, the Brits were vaccinating millions of people.
I wont be getting on a plane or ship thats for sure. I am waiting to see if numbers rise before I go anywhere in the UK. Hotels in the UK are still in lockdown and we can sit outside to eat in small numbers but there is a relaxed feeling when we go out. Covid is forgotten by some. Covid isnt going away soon, Anne uk
I’m not entirely sure what’s so funny about Good Morning but glad it entertains you 😊 Very much ‘light entertainment’ and not the best for reliable updates on what’s happening here.
As Anne said, rightly or wrongly, many were keen to sever the administrative links with the EU to allow less restriction to our governance and independence but the UK certainly continues to love our European countries and their people. We are a small country and can be in France & Spain quicker than many Americans can travel to the next State. Also they have better weather than us.
I’m actually proud of how the majority of Brits have coped with this pandemic. Compared to many places in the world we have shown compliance, sharing and forbearance.
Sadly however, many European destinations will be off the menu this year and they’re already desperately missing the Brits. We are good spenders on holiday! 😉
Thank you Len and Dr. Furman so making this fantastic video communication available to us here!!! So much new information was concisely delivered that I was focused throughout the hour long presentation. I would encourage everyone to get tested for antibodies through either research group, but agree that your personal results should not change your behavior (until the research groups determine whether particular titers (levels) of anti-COVID antibodies are predictive of immunity to infection in CLL patients. The more CLL who get tested for antibodies thru these research groups, the sooner such recommendations may be available.
What immunosuppressed patients should know about the coronavirus vaccines
By Lindsey Bever April 23, 2021 at 12:09 p.m. EDT
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Cancer patients. Organ transplant recipients. Individuals with HIV. Those with autoimmune or chronic inflammatory conditions such as lupus, multiple sclerosis and rheumatoid arthritis.
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An estimated 10 million people in the United States are considered immunocompromised, including those who were born with immune-system deficiencies. It often makes them more susceptible to infections and puts them at a higher risk of experiencing a more severe outcome when they get sick.
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So it makes sense why many would want to inoculate themselves against covid-19, the illness caused by the novel coronavirus — and public health authorities have advised them to do it.
But even though the coronavirus vaccines authorized for emergency use by the Food and Drug Administration are considered safe for people with compromised immune systems, some of them may not produce protective antibodies after vaccination, or any antibodies at all.
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That’s why researchers are working to understand more about vaccines’ effectiveness within the immunocompromised community and how to protect the most vulnerable.
I’m immunocompromised. Will the vaccines work for me?
No one knows yet for certain, and it will probably depend on a number of factors: the individuals, the illnesses and which immune-suppressing treatments are involved in their care.
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U.S. clinical trials did not specifically study the effectiveness of the coronavirus vaccines in people with compromised immune systems, so there is not yet conclusive data to show how they will ultimately respond.
But emerging research seems to suggest it will be a mixed bag — that although some immunocompromised individuals may make antibodies, others may not. And for those who do, it is not known whether the antibodies will be effective at neutralizing SARS-CoV-2 (the virus’s official name), what level of antibody will be needed to protect against infection or how long the antibodies will last.
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Many of these questions remain unanswered for the general population, too.
Staying together — six feet apart. Immunocompromised families grapple with coronavirus.
Ghady Haidar, an infectious-diseases physician at the University of Pittsburgh Medical Center who specializes in organ transplant recipients, said he and his team studied immune responses in blood-cancer patients who received both doses of one of the FDA-authorized messenger-RNA vaccines and discovered that 46 percent of them did not produce any antibodies against covid-19.
“These were expected results, as disappointing as it is,” Haidar said about the findings.
He said each flu season, he urges his cancer and transplant patients to get the flu shot, telling them that although it’s “probably not going to work as well as with someone with a healthy immune system, it might soften the blow.”
“My hope is the same will hold true for covid-19,” he said.
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All of that said, some early studies are showing that, for some patients, the vaccines are producing antibodies.
In fact, one journal pre-proof out of Mount Sinai’s and New York University’s medical schools documented detectable antibodies in inflammatory bowel-disease patients who received at least one dose of either the Pfizer or Moderna vaccines.
Why you shouldn’t get a covid antibody test after your vaccine
Charlotte Cunningham-Rundles, an immunologist at the Icahn School of Medicine at Mount Sinai who was not involved in the previously mentioned study, said she has also seen an immune response in some of her patients after coronavirus infection and vaccination. Cunningham-Rundles treats many patients with congenital immune-system deficiencies.
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However, she said, a “big caveat” to her observations is whether the detected antibodies are capable of fighting infection and for how long they will be able to do the job.
Still, for those who do not develop protective antibodies from the vaccines, she said it is also important to remember that “the immune system is not a one-trick pony.” Aside from antibodies, the immune system also enlists protective T cells — white blood cells that help protect against viral infections.
“So antibodies are only part of what an immune system can do. It’s a big, big part, and it’s a fantastic part, but many people who don’t make antibodies at all still have a working T-cell side, and the T-cell side can say: ‘Okay, I can do some stuff here. I can help you out. I know how to kill viruses,’ ” she added.
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So how will I know whether the vaccine has done its job?
There’s no way to know for sure.
Yes, there are antibody tests. But the tests vary in the types of antibodies they detect, and even when they do detect antibodies, it’s not that informative, because experts do not yet know the level of antibody needed for protection against the coronavirus.
And as Erin Longbrake, a neurologist at Yale New Haven Hospital, explained, those tests do not look at the response from the other arms of the immune system, such as T cells. She said she and her colleagues are studying B-cell and T-cell responses in vaccinated patients who have multiple sclerosis and other autoimmune neurological diseases.
It’s for these reasons that official health authorities and many medical experts agree antibody testing for assessing immunity post-vaccination is not recommended. “And it really doesn’t change the makeup of what you’re going to do next,” said Gauri Varadhachary, a professor of gastrointestinal oncology at MD Anderson Cancer Center.
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Unlike with other vaccines, such as for hepatitis B, at this time, health authorities are not recommending a repeat dose of the coronavirus vaccines for people who do not make antibodies.
Haidar, at the University of Pittsburgh, acknowledged that “it’s frustrating for people.”
“I know patients want to be tested, and there are doctors who are also testing their patients. I get it — I do,” he said. “But the issue then becomes: ‘Well, what do we do now?’ ”
“I worry that if immunocompromised people are antibody positive, they might be infused with a false sense of overconfidence. And if they’re antibody negative, what do you do? I know that many patients are panicking when they realize that the vaccine ‘did not take,’ ” he added.
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Without being able to offer more to immunocompromised patients right now, Haidar said, “I personally think that, for now, we should restrict post-vaccine antibody monitoring to studies, so that we can understand this better.” But, he said, assuming health authorities change their recommendation down the line, “we can certainly change our practices then.”
What more can I do to protect myself against the virus?
Medical experts agree that most immunocompromised people should still get vaccinated, because, to recap, many people may make protective antibodies. And others may still achieve protection from the cellular side of the immune system as it’s revved up by the vaccine.
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That may mean working with treating physicians to balance the timing of the shots with any immune-suppressing treatments such as chemotherapy or other medications for underlying illnesses.
Even after vaccination, experts say, those with immune-system deficiencies will need to be extra cautious: continuing with hand-washing, mask-wearing, social distancing and choosing the types of gatherings that are the safest for them.
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And as time goes on, there may be alternative ways to try to boost the immune system.
Gamma globulin, for example, takes disease-fighting antibodies from healthy donors and gives them to those who cannot make antibodies on their own.
Cunningham-Rundles, who is also a professor of medicine and pediatrics at Mount Sinai, said that within the next year, many immunocompromised patients who are on immunoglobulin therapy will be receiving covid-19 antibodies through their regular infusions as more donors have made antibodies, either through natural infection or vaccination.
There are also laboratory-designed monoclonal antibodies, which have been used to treat patients with active covid-19 infections. But several companies that make them are now looking into whether monoclonal antibodies may be used prophylactically. Specifically, AstraZeneca is running a worldwide clinical trial to determine, at least in part, whether they would protect people who are at “increased risk of inadequate response to vaccination.”
But it’s not all about what immunocompromised patients can do to protect themselves from covid-19; it’s also about those around them.
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“Every vaccine that goes into the arm of someone — anyone — is more protection for these people who aren’t able to build a full response to vaccination,” Longbrake said. “So as many healthy people who get vaccinated, that’s one fewer person who can pass covid on to these more vulnerable people.
“Everyone needs to get vaccinated, so we can protect those who can’t protect themselves.”
Two new studies published in Blood suggest that the mRNA COVID-19 vaccine may have reduced efficacy in individuals with chronic lymphocytic leukemia (CLL) and multiple myeloma, two types of blood cancer. According to researchers, these studies could help inform the ideal time for vaccination of these populations.
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Study suggests two-dose COVID-19 vaccine is less effective for people with CLL as compared to healthy controls
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The first study reports that people with CLL had markedly lower immune response rates to the two-dose mRNA COVID-19 vaccine than healthy individuals of the same age. Because clinical trials of these vaccines did not include patients with blood cancers, who are at high risk of severe illness and complications from the virus, gauging the effectiveness of the vaccine in this population is critically important.
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In this study of 167 patients with CLL, only four out of 10 (39.5%) had a positive antibody-mediated response to the vaccine; all healthy adults (controls), by comparison, marshalled an immune response.
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Interestingly, the research revealed wide variations in immune response among patients with CLL depending on where they were in their cancer treatment process. For example, patients undergoing active cancer treatment had significantly lower response rates to the vaccine when compared with people who had completed treatment and were in remission, 16% vs 79% respectively. Treatment naïve patients (those whose disease is being watched but not yet treated) had a 55.5% response rate. As well, response to the vaccine was markedly higher in people who completed CLL treatment at least a year before vaccination compared with those who were still in treatment within the last year, 94% vs 50%, respectively.
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"Overall, the response rate to the vaccine was significantly less than what we see in the general population, which is most likely attributed to the presence of cancer itself and certain CLL treatments," said lead author of the study Yair Herishanu, MD, associate professor in hematology and head of the CLL service at the Tel Aviv Sourasky Medical Center in Israel. "It would seem that if you are untreated, in what we call 'watch and wait' or do not have active disease, you can gain more benefit from the vaccine. Patients who responded the best were in remission, which makes sense because their immune system had a chance to recover."
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Aside from not being on active CLL treatment, younger age, being female, and having normal immunoglobin levels at the time of vaccination independently predicted better response rates to the vaccine. In addition to poorer qualitative antibody responses to the vaccine, patients with CLL also had lower antibody titers, which tells us that, in addition to fewer patients responding to the vaccine, the intensity of the response was also lower, explained Dr. Herishanu.
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For the study, researchers included 167 patients with CLL and 53 healthy controls from December 2020 through February 2021. All participants received two doses of BNT162b2 messenger RNA (Pfizer) COVID-19 vaccine 21 days apart; this was the only vaccine used in Israel at the time of the study. Patients were 71 years old on average, and 67% were men. Fifty-eight patients (34.7%) were treatment naïve; 75 (44.9%) were on active therapy; 24 (14.4%) were previously treated and in complete or partial remission; and 10 (6%) were in relapse. Antibody titers were also measured two weeks after the second dose. Patients were followed for a median of 75 days since receiving their first shot, and none had developed COVID-19 infection. There were no significant differences in reported side effects to the vaccine compared to the healthy population.
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Researchers also looked at immune response to the vaccine based on which CLL treatment patients received. They found similarly low response rates among patients who were receiving common targeted therapies, including Bruton's tyrosine kinase (BTK) inhibitors (ibrutinib or acalabrutinib) or a combination of venetoclax with anti-CD20 antibodies such as rituximab. Notably, none of the patients who received anti-CD20 antibodies within 12 months of COVID-19 vaccination responded. Because only five patients were on venetoclax monotherapy, Dr. Herishanu said they could not draw any conclusions about the impact on response.
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People with CLL and other blood cancers remain at high risk for severe illness and complications with COVID-19 infection, and while response rates are lower than ideal, vaccination against COVID-19 is strongly recommended. The authors suggest that an additional booster dose of the vaccine might be needed for patients with CLL who have completed therapy and previously failed to respond to COVID-19 vaccine, though this would need to be studied.
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"Even though response rates were not optimal, patients with CLL should still get the vaccine and, if appropriate, it may be better to do so before CLL treatment starts although the disease itself may affect the response," said Dr. Herishanu. "Equally important is continuing to take precautions - wearing a mask, avoiding crowds, keeping a social distance, and being sure close contacts get vaccinated against COVID-19."
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He and his team will continue to follow these patients for 12 months to see how many, if any, develop COVID-19 infection following vaccination. Since this study only assessed antibody response, they also plan to check the cellular immune response to gain a more complete picture of the extent to which patients are protected after vaccination.
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The researchers note that the same trends would be expected with the other mRNA vaccine (Moderna).
Thanks Len. Very interesting. Wish there had been more on Venclexta monotherapy as that is what I am on. For some of us, there is no "stopping" treatment, but we will continue as long as it works.
Your immune system is composed of three major “systems” that can work independently of each other or work in concert. That one of them might not work well as you want does not lessen the other two. As part of the early research, all three systems are triggered and can act independently. We do not routinely test the other systems.
This blood test looked at the number of antibodies formed by a specific date. Is it possible that people with altered immune systems take longer to make antibodies? That would require taking too many blood tests over a longer period of time and so that is not done outside of research studies/clinical trials.
Is it possible that your immunization triggered more memory cells than active antibody producing cells? We do not test for this.
Reporting of SARS-CoV2 post vaccination does show that, while subsequent infection is possible, there have been no reported deaths and no reports of serious disease. Is that true for the immunocompromised? We do not know.
This virus is approximately 2 years old. Never in the history of science have we learned so much about a virus, a disease, and or prevention in so short of time. Do we have all of the answers? I suspect we do not yet know all the questions so, no, we do not. Perhaps what we all need to do is to concentrate on living each day to the best of our ability.
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