Covid19 vaccine and CLL : Was having a... - CLL Support

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Covid19 vaccine and CLL

kitchengardener2 profile image

Was having a discussion with a retired oncology nurse friend this week. I said that I don't intend to go on holiday or travel much until there is a vaccine for Covid19. My friend said that even when a vaccine is available, I might not be able to have it due to my CLL. Is there any information available to this end. I am aware that we are unable to tolerate live vaccines so we choose holiday destinations where I don't need live vaccines.

21 Replies

Most of the prospective Coronavirus vaccines are inactivated, i.e. not made with live attenuated virus which could cause someone with reduced immunity to develop a full blown infection.

Generally CLL patients are advised to get vaccinated against seasonal flu and maybe also pneumonia,

cllsociety.org/2019/10/vacc...

But there's a potential problem. An antiviral vaccine is intended to stimulate the adaptive immune system to produce antibodies against the virus. The immune response of a minority of leukaemia patients is too weak to produce enough antibodies to prevent later infection. That's why, for example, CLL patients (like me) on chemotherapy are advised against having the winter flu jab. Although an inactive version is available, it just wouldn't work.

AussieNeil profile image
AussieNeilAdministrator in reply to bennevisplace

I would say that most CLL specialists consider that the risk of dealing with a flu infection, including potentially fatal secondary pneumonia, makes it well worth while having the annual flu vaccination, even if little to no response may occur. This year I questioned my haematologist about whether it was worth me having my flu vaccination when I had zero detectable B-lymphocytes in my blood due to my treatment working very well. The answer was yes, because even with a low likelihood of generating new B-lymphocytes to produce immunoglobulins against the flu strains in the vaccine, the vaccine can still stimulate T cells, memory cells and plasma cells. This is partly why having the flu shot annually is more effective than having it every now and again - it re-stimulates the effect of previous inoculations. From Wikipedia: "Plasma cells, also called plasma B cells, are white blood cells that originate in the bone marrow and secrete large quantities of proteins called antibodies in response to being presented specific substances called antigens. These antibodies are transported from the plasma cells by the blood plasma and the lymphatic system to the site of the target antigen (foreign substance), where they initiate its neutralization or destruction. B cells differentiate into plasma cells that produce antibody molecules closely modeled after the receptors of the precursor B cell." en.wikipedia.org/wiki/Plasm...

Neil

Thanks for that insight Neil.

With CLL I missed just one flu jab, while on treatment and on the advice of my haematologist. I don't know for sure but I trust he was aware of the potential for vaccination to stimulate various kinds of immune cell.

Mystic75 profile image
Mystic75 in reply to AussieNeil

Wow, Neil...your post couldn't have come at a better time!

My husband's blood work still shows absolute lymphocytes at 0.6, even though he stopped treatment a little over a year ago. Basically, it hasn't changed since then although thankfully his neutrophils are in good working order.

You post addressed some of my own questions so thank you so much!

D.

My understanding is that the vaccine currently being trialled by the Jenner Institute at Oxford University will be appropriate for CLL patients as it is not a live vaccine. Interestingly the first 1100 vaccinations were carried out starting 23rd April. They are now recruiting a further 10000 participants in the older (55+) age groups to expand the trial. Seems that they believe good progress is being made.

ox.ac.uk/news/2020-04-23-ox...

I remain optimistic !

I'm going to give a different perspective on the vaccines that are currently in trial for COVID. This virus came on like a freight train here in the States in January with virtually no one knowing what to do about it. Some states got it worse than others with New York being hit very hard. The 'experts' couldn't agree and first we wore masks, then it was determined they might only be about 10% effective. We stayed in place for weeks while the 'experts' became wishy washy in their advice. Our economy (and the rest of the world) and the unemployment rate are in very bad condition all because of a virus that no one could decide what to do about. Here's my perspective. Sweden did not lock down and their cases were mild. Italy and Spain were hit terribly hard. The vaccines that have been created so quickly will not be entering my body and I'm rethinking the flu shot for this year. I've lived through many flu epidemics and feel this virus was very much overblown and if my country would have been left open to create herd immunity we wouldn't be in the situation we are now. My state of Arizona opened on Monday, May 11 and so far not seeing what was predicted if it were to open. Do I believe this virus is real, yes. Do I believe it was so bad that it needed to bring the world to a stop, no. Even with my condition I will not give up my freedom when experts cannot agree.

I certainly agree that the advice has been very confusing. Given the economic sacrifices, it is understandable that people do have concerns about that as well.

I think it is hard to say how successful Sweden has been without a lockdown.

Sweden has a population of 10.10 million people and as of today it is reported they have 32,809 C-19 cases with 3,925 deaths.

Whereas, Norway has a population of 5.416 million people and as of today it is reported they have 8,322 C-19 cases with 255 deaths.

In April, the following article was published on how Sweden and Norway differ:

businessinsider.com/how-swe...

I guess it depends on what column one ends up in - recovered or dead, which will influence one's opinion. Living in a state that has been hard hit and knowing a number of people who have contracted C-19 is probably a different perspective than someone who hasn't had been directly affected by C-19. On the other hand, many people are suffering greatly economically, which is a whole separate issue.

AussieNeil profile image
AussieNeilAdministrator in reply to ladyprescott1

I suggest you look again at the comparative death rates corrected for the population of the Scandinavian countries as I did a few days ago. There was a greater cost in lives in Sweden that corresponds to the lesser restrictions. Their strategy surprisingly hasn't helped them get to herd immunity levels significantly faster either: edition.cnn.com/2020/05/21/...

Country - cases per 1million - deaths per 1million : ( worldometers.info/coronavir... )

Denmark - 2k - 97

Norway - 1.5k - 43

Finland - 1.2k - 56

Iceland - 5.3k - 29

Sweden - 3.5k - 418

Sweden becomes country with highest coronavirus death rate per capita over past seven days, with 6.08 deaths per million inhabitants, higher than the UK, USA and Italy

telegraph.co.uk/news/2020/0...

It's a bit unrealistic to expect experts to agree when it takes time for accurate studies and analysis. Remember that the purpose of implementing lockdown was to prevent intensive care facilities from being overwhelmed, which would have resulted in many more deaths. theconversation.com/the-cal... Flattening the curve saves lives and gives breathing time to implement testing and contact tracing, so you know where you can safely lift restrictions. A week ago, the coronavirus had killed more Americans than the Vietnam War, Gulf War, Afghanistan War, and Iraq War combined. Covid-19, in the space of about three months, has killed more people in the USA than any of the last nine flu seasons, with 61,000 dying from flu in the worst year in that period. Does that perspective really seem overblown when there are predictions of a further 60,000 Americans dying?

I sincerely hope that opening up states works as hoped, but I am concerned that much needed testing to properly support a return to the new normal is somewhat lacking from what I've read.

Neil

Neil; thank you for your perspective. However, the number of COVID deaths here has been overly exaggerated in that people with stage 4 lung cancer (for example) that went to the hospital with a cough and ultimately died were listed as a COVID death. The more COVID deaths the more money the hospitals got, so we can use that as a statistic. The governor of South Dakota did not shut down her state. True, not a large state, but also fewer deaths by percentage. Both the governors of California and New York sent COVID seniors to nursing homes and infected others and nursing homes have been the hardest hit. What the answer is, we will find out as each state begins to open.

Newdawn profile image
NewdawnAdministrator in reply to ladyprescott1

I think that regardless of politics, scientific differences or societal disagreement over the best way to contain Covid 19, I’m pretty convinced that my CLL and co-morbidities would very likely finish me off should I contract this virus!

I have a much younger cousin, a nurse in previously good health who has barely survived this dreadful virus and I ain’t picking a fight with Mother Nature on this one!

Everyone needs to make their own choices but we have to remember our actions have wider implications and on this one I’m thinking for myself. My instincts tell me to continue shielding and resist any opportunity to test out conspiracy theories.

Best wishes,

Newdawn

Newdawn profile image
NewdawnAdministrator in reply to ladyprescott1

I’m afraid the approach Sweden has taken with free association is not as successful as you describe ladyprescott;

‘Sweden has received considerable media scrutiny in recent days. According to figures published on Tuesday, it now has the highest coronavirus-per-capita death rate in the world, with an average of 6.08 deaths per million inhabitants a day on a rolling seven-day average between 13 and 20 May. As of 22 May, Sweden has had 32,172 confirmed cases and 3,871 deaths. These figures are lower than those of Italy or the UK. But they are higher than those of Portugal and Greece, two countries with a similar size of population to Sweden. The figures are also much higher than Sweden’s Nordic neighbours, with Denmark at 11,182 cases and 561 deaths, Norway at 8,309 and 235, and Finland at 6,537 and 306.’

theguardian.com/commentisfr...

Newdawn

" The more COVID deaths the more money the hospitals got, so we can use that as a statistic. "

Since my husband said something similiar to me, I looked into it and saw this article in USA Today.

usatoday.com/story/news/fac...

..."Jensen said he did not think that hospitals were intentionally misclassifying cases for financial reasons. But that’s how his comments have been widely interpreted and paraded on social media."...

Newdawn profile image
NewdawnAdministrator in reply to Mystic75

Naturally this set of circumstances does not relate to the U.K. Mystic. As a society, we have worked together to protect the NHS without regard to increasing federal/governmental funding. The emphasis here has always been on capacity and ability to cope not commercial gain.

Our biggest issue has been trying to secure the right level of PPE which was obviously also an issue in some US States I understand.

Regards,

Newdawn

Mystic75 profile image
Mystic75 in reply to Newdawn

Absolutely, and I would go so far as to say that the emphasis on capacity and the ability to cope is a crucial reason for social distancing in the US as well. And you're right, PPE has been a big issue in the US.

In the middle of all of this has been misinformation being circulated on a number of issues thru various media outlets, e.g. C-19 patients being overstated in order for hospitals to gain financially.

I don't know if there has been any instances of this, but has it happened enough to significantly impact the reported number of C-19 hospital patients in the US?

I don't think so, especially when taking everything else into account.

Newdawn profile image
NewdawnAdministrator in reply to Mystic75

It’s interesting that you say this Mystic because everything I read suggests the US numbers have been vastly underestimated and reported.

We sincerely have to hope the mortality numbers start to ease there as more states start to ease lockdown. Even in my town, there was a significant spike in cases as the result of VE Day celebrations where social distancing wasn’t observed as strictly as suggested. So much so that some called it ‘Virus Escalation Day’ 🙄

Regards,

Newdawn

Jonquiljo profile image
Jonquiljo in reply to Newdawn

The US numbers ARE vastly underestimated and under reported! In most places you are lucky to get a test if you are admitted to a hospital with COVID symptoms. Tests are at a premium mainly because our COVID response is an overall failure with poor centralized coordination. No centralized coordination is perhaps a better way to put it. Most of all, we have absolutely NO LEADERSHIP.

The US is way up there in number of cases per 100,000 people - #5 I think. We are one of the worst at testing. Even today, there are at least 3 states that are so pathetic that they have been mixing their viral PCR test results together with their antibody test results. These two tests are testing different things! There is no conspiracy, just lack of common sense and thought.

In terms of opening up states or regions - it takes 2-3 weeks for the virus cycle to show an increase in cases. Testing is also backlogged so it will make that "lag" in reporting even slower.

Coronavirus is very easily transmitted - much more than the flu. Even worse, it is known to produce a number of "asymptomatic carriers" that can infect other people when they do not show symptoms at all. This is not a virus to take lightly.

To the OP, kitchengardener2 -- I think what your friend told you was wrong. It is likely that any vaccine that makes it to the top of the contenders is far more sophisticated than a live vaccine. The latest US vaccine by Moderna is an mRNA vaccine. This technology is so new that no mRNA vaccine has ever been approved by the FDA. The UK vaccine at Oxford is a brilliant one - and IMO will do quite well. No problem for CLL patients likely as well. Then we have a dozen or so other candidates. The vaccine efforts have NOT been rushed, but rather our respective countries have thrown the best of the best at the problem - worked together and collaborated on production this early in the game. Yes, even without leadership people can get together and make things happen!

Regarding hospital corruption - not to worry. Hospitals (in general) are losing a fortune on COVID patients. The reason they have raised Medicare reimbursement is because Medicare usually is a losing proposition for hospitals and providers. Either way - they will still lose money vs. doing expensive elective procedures such as joint replacements, etc.

Finally - I feel that CLL patients generally represent a spectrum of immune suppression. It likely depends what stage you are at, etc.- as to how you would do if you got COVID. People simply do not know! No two of us are alike. So we stay safe out of an abundance of caution.

So please, lets calm down about all of this and accept that we have a ways to go - and need each other to get through this mess. Good luck.

Jon

Zia2 profile image
Zia2 in reply to Jonquiljo

I agree with most of what you’ve written but just a FYI. I had a test within an hour of a call and our large mall is giving them daily by the hundreds if not thousands. I’m in IL.

Jonquiljo profile image
Jonquiljo in reply to Zia2

Yes. Well, I'm in California and even my cardiologist told me he could not get one - and he is at Stanford. He said without symptoms even he could not get a test.

It's a testament to our piecemeal, leaderless, crazy and irresponsible response to the pandemic. The pandemic is real, very real. We have a lot of smart people in the world and they will find a way to get us out of this together. Meanwhile it's not going to be fun.

Zia2 profile image
Zia2 in reply to Jonquiljo

I’m sorry to hear that. It is unacceptable. My daughter is in CA as well.

AussieNeil profile image
AussieNeilAdministrator in reply to Mystic75

Factcheck agrees with you.

Q: Are hospitals inflating the number of COVID-19 cases and deaths so they can be paid more?

A: Recent legislation pays hospitals higher Medicare rates for COVID-19 patients and treatment, but there is no evidence of fraudulent reporting.

Numerous readers have asked us about such claims, some of which imply that hospitals are making money by simply listing patients as having the disease — when in fact the payments referenced are for treating patients. And while some of the posts imply that fraud may be afoot, multiple experts told us that such theories of hospitals deliberately miscoding patients as COVID-19 are not supported by any evidence.

factcheck.org/2020/04/hospi...

Mystic75 profile image
Mystic75 in reply to AussieNeil

Thanks, Neil - and just to emphasize, it would be fraud.

Perhaps the economic concerns may be influencing some of the reporting - if the numbers are not as bad as we thought, then things can get back to normal sooner.

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