Avoiding COVID-19 Infection when you have Chro... - CLL Support

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Avoiding COVID-19 Infection when you have Chronic Lymphocytic Leukaemia or SLL, by Chaya Venkat of CLL Topics/Updates (speculative article)

AussieNeil
AussieNeilAdministrator

A very important post from Chaya: updates.clltopics.net/4936-...

Anyone who knows the dedication Chaya has for those of us with CLL/SLL, will be recommending her latest article as a must read!

That's why this is an unlocked post.

**Update**: This post has resulted in a huge amount of interest and much concern, so I should highlight that Chaya has posted her speculative and hopefully rather pessimistic appraisal out of concern for a community that she dedicated a huge amount of personal time supporting, through thorough researching and then turning relevant research papers into easily readable language. Chaya's qualifications are in chemistry, not medicine but she took particular interest in the infection risks for those with CLL after losing her much loved husband, who had CLL, to an infection that should not have happened. I learned much of my initial CLL knowledge from Chaya's articles and resulting discussions and she greatly inspired me to pass on what I learn through my continuing personal studies here and in other CLL communities.

I recommend cajunjeff's post here: healthunlocked.com/cllsuppo... be read for a more balanced viewpoint.

Neil

113 Replies
oldestnewest

Great to read one of Chaya's rambles again. Unfortunately there would be no COVID prophylaxis drugs available to CLL patients in Australia.

Nathalie99
Nathalie99 in reply to seelel

Good point, seelel.

Perhaps we could advocate for the antibody treatment (Regenron, monoclonal antibody) in Australia?

Any thoughts, lymphomaoz ?

Phil4-13
Phil4-13 in reply to Nathalie99

Monoclonal sounds good to me.

HopeME
HopeME in reply to seelel

The silver lining for you is Australia has had approximately 28,000 cases country wide since the start of the pandemic. The US by comparison has had over 20,000,000 confirmed cases. More importantly, the new infection curve is increasing parabolically in the US while Australia’s is flat. I like your odds much better than mine with or without the prophylactic/early intervention drugs. I can’t even imagine trying to navigate the healthcare system here at this moment and it is likely to get much worse before it gets better.

Sushibruno
Sushibruno in reply to HopeME

Very scary stuff😢

We think of what you are going through daily. And hope that things improve this month for all including friends and former work colleagues. Keep safe.

Thanks for the big smile, from looking at the picture. So cuuute!!

Jm954
Jm954Administrator

A good round up of information as we know it at the moment. It might be worth all CLL patients looking now at where the antibody treatment is available and if, heaven forbid, they need it, they have the information to hand.

Jackie

A great article. I wasn’t battling CLL when she was active so I haven’t read much of her writing. She is highly intelligent and a skillful communicator. My biggest takeaway: I’m concerned she is so concerned to feel the need to come out of “retirement’. She obviously sees a large threat to our community and feels she can make a difference. I plan to take her article as a wake up call to be extra vigilant. My primary question is what does the CLL Specialist community think? Why is Chaya leading the charge and not the medical community? Are they simply overwhelmed?

Justasheet1
Justasheet1 in reply to HopeME

Mark,

I read the article and thought the same thing. As for the antibodies. I had the first Moderna vaccine and hopefully will procure the second on time. My response will be what it will be but I’m happy to get it. The monoclonal antibody, I had to track down. I called the hospital’s nearby and only one had it, per the pharmacist on duty.

The protocol is as soon as you receive a positive test, you notify your doctor.

I spoke to my local hematologist who said that he would do a telehealth visit and send me there straight away for the infusion. Thankfully he was on staff there. He said that he has already ordered it for other patients but could not share the details.

It took me a day to line this up at the prompting of cajunjeff and I’m grateful to him. So I suggest to heed Chaya’s advice and get going with this. As of now, prophylactically it’s not being given but at first diagnosis before hospital admission or oxygen therapy, it is.

Stay well and be safe.

Jeff

Loved the bunny, not so much the rest of it😪😷

Thank you posting the link, incredibly informative and sadly a powerful warning.

A fascinating read. It hammers home the true threat of Covid.

I was about to post Chaya's article having just received an email from her site.Very interesting article!

Dave

Neil,

Thanks for this post. Though scary times and news, it reinforces that we stay vigilant until the calvary comes. It might be an antibody, vaccine, herd immunity or a drug but it will come soon. The doctors are just too smart and proud to let this beat them for very long.

We’re already way ahead with the vaccines development. Now if we could just get it to everyone and especially in the US, to take it.

Stay well and continue to be safe. Happy 2021!

Jeff

I to read chaya's post. Thanks for posting it here.The beauty of the day is the photo. Great.

Sue

Neil this is very scary, and even more eye opening. Now I dont even want to go see dr Lamanna. I'm gonna ask her about monoclonal antibodies and am very looking forward to what her response, opinion will be.

SofiaDeo
SofiaDeo in reply to Sushibruno

Sushibruno, please don't be scared! It's like looking both ways before crossing the street (well not really), we just need to make sure we don't slip up in our precautions. And if you are taking eye, nose/throat, and surface precautions....that's what the infectious disease people do when they see patients. They rarely, rarely catch diseases from their patients.

The picture.... I see that baby rabbit hiding in that hole frightened and trying to get away from everything that can harm him. ( WE CAN ALL RELATE)

Many thanks Neil.

Well I'm totally dumb struck to read that and somewhat in a state of shock at Chaya's decision to come out of "retirement".

I'm just no good with words. Dedication ? . . . there isn't a version of it suitable here. I'll have to go to the word foundry and mint a new word. . . it's going to take me a long time . . .

I am joyful though to see the picture of Chaya (at the end of the article for those not there yet) looking so well.

Happy New Year, and Best Wishes to all.

Ernest

Newdawn
NewdawnAdministrator

For me, this is the most terrifying sentence in her article;

‘Now for the not so good news: chances are slim to none that CLL patients will respond to vaccines’.

I’ll still be having it when available because of the ‘slim’ mathematical probability that it will help me but it feels like I’ve been waiting for the cavalry and now been informed they’re on their way but all injured and useless in protecting me!’ 😟

I’ll be mentioning this to my Consultant (should I ever get to speak to him personally) but as I can’t access and be offered the IVIG I need, I’m not supremely confident about obtaining a monoclonal antibody cocktail especially prophylactically.

Newdawn

PaulaS
PaulaSVolunteer in reply to Newdawn

Newdawn, I was surprised to read Chaya's comments on vaccinations. CLL patients' responses to vaccines are very variable and unpredictable and I feel she is being unnecessarily negative, especially as we don't yet have data on the efficacy of the Covid jabs for CLL patients . I have great respect for Chaya but did not think this was a helpful speculation for her to make.

When I was given various vaccinations a few years ago, doctors said I probably wouldn't get good responses, if any. But serology tests done later showed surprisingly good responses..

I will certainly get the jabs as soon as they are offered to me, even though I accept that I probably won't get as good responses as non- CLL folk will.

Paula

P.S. The rest of Chaya's article was very helpful, especially the stuff about use of monoclonal antibodies.

Newdawn
NewdawnAdministrator in reply to PaulaS

Yes I agree entirely with that summation Paula. I rate Chaya very highly.

I am concerned about the possible negative impact of that statement however and I’ll admit it hit me like a brick! ☹️

Newdawn

Justasheet1
Justasheet1 in reply to Newdawn

Newdawn,

I must admit that I read the article and was rattled but as time sunk in I discarded much as assumptions.

The vaccines are new technology and there’s no way of knowing the responses other than to assume that it will be less than robust for most.

The link about creating antibodies after infection also indicated 2/3 of the CLL patients made them.

I agree with the gravity of this virus for us but I’m also impressed with the stories of the Cll experts reporting that their patients by and large are doing okay and even on the forum except sadly lately with 2 wonderful people.

I understand that she is a legend but perhaps not being a physician handicaps her to some degree.

I will heed her advice but my path is my own. When I was diagnosed with CLL the doctor told my wife the lifespan was about 10 years. Ten years for who? That’s a broad brushstroke. We are all different in CLL and in covid.

Then along came the new medicines. If a doctor can get it wrong so can anyone including Chaya. I hope just like with ibrutinib and Venetoclax there’s a blockbuster for covid coming to everyone very soon.

Jeff

👍👍

Phil4-13
Phil4-13 in reply to Justasheet1

😀 Great response to that article!!!! Sandra

Big_Dee
Big_Dee in reply to Justasheet1

Hello Justasheet1

I agree with your assessment. I do think all of us CLLers need to be vigilant against any virus, so nothing has changed, but new meds for CLL coming down the pike. I suspect covid will similar to flu requiring an on going battle for years to come. My wife gets her second covid shot Wednesday. Blessings.

Justasheet1
Justasheet1 in reply to Big_Dee

BD,

Any luck on spousal vaccinations or is it in too short supply? Anyway, your case is the same as mine. Your wife is the exposure risk so it’s more important that she get the vaccine to shield you and we know it will be effective with her.

Bless you too and be safe.

Jeff

HopeME
HopeME in reply to Justasheet1

Scott Gottlieb, a former FDA Commissioner and Pfizer board member was on CNBC this morning. He is knowledgeable and non-partisan. Apparently, distribution is more the issue then actual shortage of vaccine. Vaccine supply is building in warehouses as it is being manufactured quicker than it is being administered. Certain states have enacted regulations and penalties regarding jumping the vaccination line, equatable distribution, etc which is grinding the process to a halt as the frontline people are afraid of making a mistake. Lots of paperwork. Also, many folks eligible for the vaccine are opting not to take the vaccination. Evidently, only 50% of nursing home workers are choosing to be vaccinated. On the other hand there is huge demand from seniors to get the vaccination but many aren’t eligible to receive the vaccination as they are under 75. He feels the government should allow all seniors access and push the vaccination through the Walmart’s and CVSs of the world since they have the computer systems to handle scheduling and distribution. A sad state of affairs.

Justasheet1
Justasheet1 in reply to HopeME

This is a short term problem. “First group, do you want the shot? Okay, on to the next group. “

Too much vaccine on hand is a better problem than not enough.

Big_Dee
Big_Dee in reply to Big_Dee

Hello Justasheet1

No luck yet on the shot, but see my GP Thursday so will find out more then. Not pushing the covid shot very hard, there are a lot of people who need shot worse than I do. Blessings.

Justasheet1
Justasheet1 in reply to Big_Dee

Need more than you? No one, you are too important to this world pal. Go get it no matter what some people say. You have to buy a lottery ticket to win.

oryoki
oryoki in reply to Justasheet1

The “broad brush stroke” of ten years was probably an average of all those suffering from CLL. When I was diagnosed ~13 years ago I found a chart, a straight line graph from zero years to twenty representing longevity chances; so it was 50-50 at ten years. These numbers accumulated from the more than 16K people diagnosed every year. I think the advancements in treatment have changed those numbers for the better. My oncologists are very optimistic at this point. Maybe check back with your doctor or dig into the data and show your doctor the newer findings.

Justasheet1
Justasheet1 in reply to oryoki

He’s no longer my doctor 😂😂😂

I ditched him after that.

Sushibruno
Sushibruno in reply to Newdawn

😒

sun_flower
sun_flower in reply to PaulaS

It really depresses me.not sure l really wanted to hear that in such stark words 😪😪

Cfar
Cfar in reply to sun_flower

I felt the same ! Having read the article it sent me in a downward spiral of depression and despair . I will take heed of its content and try and forward on to my consultant. However getting past my specialist Nurse is going to be a battle in itself ! Now I have read the many posts I feel more hopeful and less alone on this journey. Most depressing article but trying to stay optimistic and hopeful nonetheless.

sun_flower
sun_flower in reply to Cfar

Yes in hind sight l wish l hadn't read it somethings l don't need to know but at the same time we should be mindful ,today l have a shopping delivery got my wipes and gloves ready , l don't know your numbers but l would think we are not all in the same boat, luckily my cll is fairly stable and ALC is 20 so fingers crossed and as the saying goes "every little helps",take care Netflix has been a godsend xx

Zia2
Zia2 in reply to PaulaS

I agree. I thought I had COVID last week and had two tests and called two docs to see if the antibody was available for me. NOPE! So I have my first vaccine next Tues and remain hopeful and POSITIVE and EVERY single day I stay vigilant to stay alive and minimize my risks. A coworker 6 ft from me tested positive a week ago Saturday and I had 2 masks on and was not infected. I take precautions and am determined to stay as healthy as possible and live through this pandemic and I work in a hospital. Fear does not control my life. I do the very best I can and being positive has a huge impact.

Sushibruno
Sushibruno in reply to Zia2

"Fear does not control my life. I do the very best I can and being positive has a huge impact". I'm going to repeat this to myself everyday. Thank you🙂.

LeoPa
LeoPa in reply to Newdawn

I think that blanket statement isn't accurate. Depends from how many healthy B cells a patient has. It's individual.

Newdawn
NewdawnAdministrator in reply to LeoPa

Just to clarify. Leo isn’t referring to a ‘blanket statement’ I made but rather the content of the article I referred to.

Newdawn

LeoPa
LeoPa in reply to Newdawn

Exactly, thanks for the clarification.

Well this is a very discouraging and sobering article. I am quite sure Chaya knows more about Cll than I ever will. I am surprised, however, to see her write that the chances we get a response to covid vaccines are “slim to none”. Her only basis for that statement that I could see in the article was her general understanding that we with Cll, in general, have sub optimal responses to vaccines. That’s true, but suboptimal is a far cry from “slim to none”.

The data from studies for people with Cll and vaccines shows that how we respond to vaccines varies depending on the stage of our Cll and the type of vaccine.

ecil-leukaemia.com/telechar...

The mRNA covid vaccines have been amazingly effective with older people, a good sign for us I think. It’s not been tested with people with Cll yet, how can anyone say the chances are slim to none it works with us? We do respond some to other vaccines. Our response might be suboptimal to some vaccines, but once again, that’s a far cry from slim to none. Why do our doctors tell us to get flu, pneumonia and shingrix vaccines if there is no real hope they work?

I have more hope than Chaya does that many of us with Cll will get at least partial protection from the covid vaccine. Those of us in early stage could get full protection. It’s so discouraging to read we have no real hope the vaccine works. Maybe it’s just a difference of opinion over semantics. I agree with the general statement Cll patients have suboptimal responses to vaccines. But suboptimal might mean where it’s 95% effective for general population, it’s only 75% effective for us. Or 25%. Or it might mean while few of us get full protection, the majority of us get partial protection that keeps covid mild.

If the mortality rate for us is truly 33% (my doctor says it’s much less than that), that means 67% of us had enough immune response to survive. Why wouldn’t we get the same immune response to a vaccine? If our response to flu and pneumonia vaccines vary, why won’t our response to covid vaccines vary. If we have a decent chance some pneumonia vaccines work okay for us, how can we conclude covid vaccines with varying types of technology have slim to no chance of working?

I do like the idea of using either of the two monoclonal antibody treatments as prophylactic treatment, but I am not sure that’s even possible under current emergency use authorization. The authorization requires one actually have covid to get the monoclonal treatment.

Now it is true doctors can prescribe drugs off label for unapproved uses. A doctor can prescribe a blood pressure medicine for me to treat any illness I have he thinks the drug might help.

But I am not sure that is true with drugs available only pursuant to emergency use authorizations. Even though there are stories of monoclonals going unused in some places, there are shortages in other places and I just don’t see hospitals letting doctors use up their precious supplies of covid monoclonals on people without covid.

Hopefully Chaya checked this out and knows more than I do about off label use of drugs only available under an emergency use authorization. I actually know very little about that other than my intuition tells me prescribing a drug off label only available under emergency use authorization is different than prescribing an approved drug off label. And this is a different issue from whether insurance or Medicare would pay for me to take a monoclonal treatment as a preventative before a covid diagnosis.

It’s a good thought Chaya has and I will ask my doctor if he thinks I should get monoclonals as a preventative and if it’s even possible to do so.

Like many on here I have read and enjoyed many articles from Chaya on Cll. Her knowledge of Cll and ability to explain it in terms we understand is unsurpassed.

It’s just such a downer for me to read I have so little chance of the vaccine working. I don’t see how such a blanket statement can be made and I have not seen any Cll specialist predict the vaccine will be of so little help to us. There could be a dozen or more vaccines for covid approved. I am particularly hopeful with the mRNA vaccines.

I expect when all is said and done and there are studies with Cll patients and covid vaccines we will see that as a group we do not as well, but that many, if not most, of us get at least some benefit from the vaccine, just as we see with other vaccines we take.

Sushibruno
Sushibruno in reply to cajunjeff

Agree Jeff your response gives me more hope and I feel better about it🙂. But chaya's blog made me think about protecting myself even more.

cajunjeff
cajunjeff in reply to Sushibruno

I think her message that we should not assume the vaccine protects us is a valuable and important message. I want to see if I can test for antibodies after I take vaccine to see if I have any protection.

But I am hopeful to get protection from the vaccine and don’t think even the greatest cll doctor in the world could predict with any certainty how well or poorly the vaccine works for us, only that our response will probably not be as good on the whole as others.

Jeff,

“Let me start with the important disclaimers. I am not a medical doctor. All I can do is put credible medical information in front of you, hopefully in a manner that you can read and understand. I cannot make medical decisions for you. Only you and your doctors can do that.” From Chaya Venkat’s post recently

“Chaya Venkat's Research Credentials

Date: October 28, 2007

by P. C. Venkat

Putting It All Together

Chaya Venkat has a formal education in the sciences (chemistry), engineering (chemical engineering) and in education (teaching of science). Her professional career has included teaching, research and technology transfer. She has no formal background in medicine or biotechnology — those subjects have been the focus of on-the-job training while writing for CLL Topics.

Degrees:

M. Sc. (Chemistry) Indian Institute of Technology, Madras;

D. Ed. (Chemistry & Education), University of Michigan, Ann Arbor, MI;

M. S. (Chemical Engineering), Princeton University, Princeton, NJ.” From her blog/website Cll Topics .

So clearly she’s brilliant but still not medically trained.

Jeff

Yes I did not think I wrote anywhere Chaya was a doctor. She obviously knows a great deal about cll, more than many doctors I suspect. My point was that I am not aware of any doctors who do specialize in cll predicting vaccines are useless for us. They don’t know yet how well we will do. Not does Shays unless there was data she relied on I did not see. No one knows yet how we respond to covid vaccine. It will likely be variable which is not the same as slim to none.

Perhaps Chaya chose those words to keep people with cll from assuming the vaccine protects them. I agree with that advice. I think the slim to none comment is too discouraging and unsupported by any data I saw other than general knowledge we don’t respond as well to certain vaccines.

She gives her qualifications here updates.clltopics.net/quali...

You did your homework Jeff👍.

Youngen
Youngen in reply to cajunjeff

Agree with you Jeff. I think we have a better than sim to none chance. There were a few CLLers in W&W that posted that they took part in the trials and had great antibody responses. I have had flu, pneumonia and shingrix and believe I have some response to all of them. May be less than the average healthy person but it’s still antibodies.

I had my first dose of the Pfizer vaccine and will have my second on the 17th and the antibody test a couple weeks after. Will share my results once I get them but I am optimistic 🤞

Lydia,I need to change my name from Jeff because you only reply to the other Jeff. 😂😂😂

Jeff

Lol Jeff don't get jelly🤣. U made me laugh!

ikahan
ikahan in reply to cajunjeff

ashpublications.org/blood/a...

Justasheet1
Justasheet1 in reply to ikahan

They’re conclusion was with PCV23 was you would need boosters. Also of note, all the vaccines were not mRNA vaccines so it could be apples to oranges.

ikahan
ikahan in reply to Justasheet1

One important factor is the treatment the patient is receiving. I was a subject in the above randomized trial on the impact of ibrutinib on antibody response to vaccines. 42 subjects with CLL were randomized to receive ibrutinib concurrently with the pneumococcal, tetanus/diphtheria and influenza vaccines (Arm A), or the vaccines first followed three months later by ibrutinib. In Arm A, 15/16 had an antibody response to pneumococcal vaccine, versus only 3/13 in Arm B. Response was lost after a year. Both groups responded to Influenza B, but for some reason Arm B responded better to Influenza A vaccine. Response to tetanus wasn’t listed in the abstract.conclusion from this small trial – BTK inhibitors may improve immune response to some vaccines, even before the patient is in remission. Clearly more research is urgently needed.

albie58
albie58 in reply to cajunjeff

Hi Jeff!The article that she cites is from sept. 2020. It only takes into consideration those CLL patients that were in the hospital. The article does not include any CLL patient that had a mild or moderate COVID case. If it did, those percentages would change. Dr. Furman was asked about the percentages based on that article and he said the same thing. He does not feel CLL patients have that high of a mortality percentage as not all cases are included in the data. However, that doesn't mean we wouldn't have a heck of a time dealing with COVID should we contract it.

And as far as vaccines go, I'm getting mine when available. I'll take any immunity I can get from it. It may not be the 95% that a healthy person would get, but anything is better than nothing!!

cajunjeff
cajunjeff in reply to albie58

We have discussed that article several times on here and I have never thought it accurately represents our mortality rate because it doesn’t include mild cases. My doctor told me out of 20 covid cases with Cll patients he has seen, there has been but one fatality.

I also do not think the article supports Chaya’s theory that our chances of getting a meaningful response to the covid vaccine, quite the contrary. If 67% of the people with Cll survived covid, then most people were getting an immune response to covid without being vaccinated. I would expect most everyone in the 67 % to have gotten an immune response to a vaccine too.

I think it also possible some of those in the study who did not survive may have survived if the vaccine had given them just some my response, even a partial response.

I really do not understand how she states in a matter of fact way that our chances of getting protection from a covid vaccine are slim to none. We have diminished response to vaccines which vary from vaccine to vaccine and from person to person.

As a group we might do well with covid vaccine or we might not. No one knows. My personal guess is that since the Pfizer and Moderna vaccines are so surprisingly effective in older people that these are vaccines that have a good chance of getting us some level of protection. There are other vaccines which have been proven to work with some of us. Why not the covid vaccine? I am taking my vaccine the first day I can. I’ll still be careful until we get more info on how it works for us.

albie58
albie58 in reply to cajunjeff

I agree 100 percent with everything you just said!!

Phil4-13
Phil4-13 in reply to cajunjeff

👍 Keep talking, cajunjeff! Sandra

Zia2
Zia2 in reply to cajunjeff

Thank you for your response! We/I have to stay hopeful AND vigilant. Without hope all is lost.... I wasn't sure at all I'd live through this pandemic since I work full time with patients/clients that don't have healthcare but here I am, 10 months later, exposed but doing well and hopeful for the vaccine. As others write, I will be joyful for 25% immunity when others w/o CLL have 95. I wake up positive every single day and will remain so for as long as it takes!

cajunjeff
cajunjeff in reply to Zia2

Yes, the percentage thing can be confusing.

When they say that the Pfizer vaccine is 95% effective, I take that to mean 95% of the people who took the vaccine had full 100% protection and did not get covid, not that they had 95 % protection. And I think that among the 5% who took the vaccine and did get covid, all had mild cases leading to the possibility that everyone who took the vaccine derived some benefit.

Now did those who took the vaccine and got mild cases have 25% or 50% protection? I don’t know it can be measured like that. I do think there is some evidence to conclude that 95% of people who took Pfizer and Moderna vaccines got full protection and the other 5% got partial protection.

My guess is that if you did a trial with the Pfizer or Moderna vaccine with a cross section of Cll patients, the percentage of those who got full protection would be significantly less than 95%, but that a lot of us would still see significant benefit either from being fully protected or partially protected.

I do not agree based on all I have read that the chances of us benefitting from covid vaccine are slim to none. Most of us have impaired immune systems, which is very different than saying our immune systems do not function at all.

Zia2
Zia2 in reply to cajunjeff

Thank you for explaining the percentages. It's even better than I had thought.

Youngen
Youngen in reply to cajunjeff

Also- even if it does not protect us 95% from getting it, there is significant advantage in even if you get covid after the vaccine, getting a much milder flavor of it!

oryoki
oryoki in reply to cajunjeff

How 95% effective translates to reducing the chance of contracting COVID is lowered 2%. There is math involved and this article explains it, if you understand math. nakedcapitalism.com/2020/12...

ikahan
ikahan in reply to oryoki

Recent evidence shows that asymptomatic people infected with Covid are less likely to infect other people with the virus. In other wordsyou need to sneeze and cough in order to spread the disease. Therefore if the vaccine stops the disease even if you carry the virus chances are you will not infect other people.

oryoki
oryoki in reply to ikahan

The studies I have viewed, the latest from December 2020, doesn’t put infection from the asymptomatic infected into the “will not infect” category. “It’s also unclear to what extent people with no symptoms transmit SARS-CoV-2. The only test for live virus is viral culture. PCR and lateral flow tests do not distinguish live virus. No test of infection or infectiousness is currently available for routine use. As things stand, a person who tests positive with any kind of test may or may not have an active infection with live virus, and may or may not be infectious.” bmj.com/content/371/bmj.m4851

Thanks Neil, I found this article pretty darn close to what I had been thinking about my own situation: recently treated with FCR, the unholy trinity when it comes to immunosuppression. In other words, I have to assume that my AB response to the Covid vaccine would indeed be "slim to none".

Which is why I made sure that my wife had the flu vaccine, while not having it myself, and is why I am writing to the UK's deputy chief medical officer to plead for CEV-cohabitors to be moved up the priority list for vaccination, and is why I am trying to get on to the PROVENT trial - Astrazeneca's MAB, given as an anti-Covid prophylactic. In the UK Regeneron's AB is available only in the RECOVERY trial, for Covid patients only.

Cajunjeff makes an important point though. Many CLLers probably are better placed than I, and would get a decent AB response to vaccine. We're all on a spectrum. Your difficulty is in determining where on that spectrum you fall. IMO it is better to err on the cautious side when it comes to your post-vaccination behaviour.

I wish everyone a happy and healthy New Year.

Newdawn
NewdawnAdministrator

In case anyone is interested in volunteering for the trials, (Stormchaser and Provent), into the use of monoclonal antibodies being pioneered at UCHL, here are the details;

uclh.nhs.uk/news/uclh-doses...

Provent criteria;

gb.c19proventstudy.com/#!/

Newdawn

mrsjsmith
mrsjsmith in reply to Newdawn

Just had a quick look and anyone on IVIG can’t apply for the Provent trial.

Colette x

Newdawn
NewdawnAdministrator in reply to mrsjsmith

That’s true and you have to leave the trial if you have the vaccine. It’s the second trial which will be of interest to us. The first is for people with Covid I believe,

Newdawn

mrsjsmith
mrsjsmith in reply to Newdawn

Yes but then you presumably need to apply quickly and not feeling great. Sadly all to complicated for my exhausted brain 🙄

Colette x

The vaccines are a new type of technology and may stimulate our immune system, whereas the "older tech" vaccines often don't. This new type of vaccine may prove to be effective in us CLL'ers even if other vaccine types don't, or it may not. We don't know for sure at this point in time. Opinions are based on previous experience, and can change. For example, when I was first diagnosed a decade ago, the monoclonals were only newly available. Up until then, 17p del people generally didn't respond to FCR & the prognosis given me was poor. While reaching out to Fred Hutchinson, a doc there told me "I should try and Fail FCR before considering other treatment." Considering there was good data that FCR generally doesn't work in 17p del, I thought that advice was insane & went elsewhere. So recommendations & advice will continue to change with Covid, it/new vaccines haven't been around long enough to know for sure who will & won't respond, and to what extent. Even a 10% benefit may prove out eventually to be the difference between catching it or not upon exposure, or severity of illness.

Thank you for posting the link. Very interesting read. I see my specialist next week and will definitely be discussing what I learned from this article.

I think that this thread is overly pessimistic. The data presented (in all cases) is really shoddy at best.

I think the best argument not to be negative about all of this is that CLL patients are totally different from one another. We represent a spectrum of the disease and a spectrum of immune-comprimisation. End of Story.

Let's all just get vaccinated for COVID - and lets try to see how the world does with all of this. Sorry, but I am not keen on medical research - but that is because most of the research I see published has holes in it the size one could drive a truck through. So the bottom line is that we really have no reliable data - just conjecture. Personally, I am not going to worry about someone else's conjecture.

I am far from an expert in CLL. I am far from a Physician. I'm not one to throw around letters next to one's name either. Let's just hope we can get vaccinated soon. That seems the biggest threat we all have to face as a group - along with the fact that most people cannot stop partying amidst this pandemic - creating overcrowded and failing medical systems that do not have the time or inclination to even think about giving us a monoclonal antibody cocktail.

Good luck.

Jon

Most depressing article I’ve read on CLL and Covid. I love and consume all available information but none has been so hopeless. Fortunately not all agree the we are doomed and encourage the vaccine for all.

Speaking from the Uk, maybe there is a need now for our CLL experts to put their heads together and issue some form of statement/guidance (hopefully including some reassurance) to CLL patients about the vaccine, given that the time when we can expect to receive the vaccine cant be too far off. Maybe through CLL Support?

This would fill something a void, even though the experts may not be able to say very much at this stage.

It is indeed very useful having Chaya's opinion, on (among other things) vaccine efficacy, but I don't intend to place huge reliance on one opinion given by someone who is not a doctor specialising in CLL..

A purely theoretical question: Why would IVIG not offer some protection against COVID? Chaya seems to assume it wouldn't.

AussieNeil
AussieNeilAdministrator in reply to ornstin

With respect to specialist's opinion, see: healthunlocked.com/cllsuppo...

Your second question is practical, not theoretical. Elsewhere a member stated that IgG is prepared a year or so ahead of use, so we should now begin to see antibodies appearing IgG. Also on IgG, we are probably getting some protection from antibodies formed for the same proteins in other coronaviruses.

Neil

ornstin
ornstin in reply to AussieNeil

Many thanks for your reply. It is most definitely helpful to me to know that some specialist US doctors are recommending the vaccine.

I was thinking in my original post that maybe some form of guidance could be issued to patients in the UK reflecting a consensus among CLL experts here about the desirability (or not) of receiving the vaccine. Could apply to other countries too.

As regards "theoretical". I only used that word because I don't receive IVIG myself (although I do have low levels of IgG).

Antony

Gosh, Chaya, I remember well her articles when I was a member of ACOR -Cll back in the last century sometime. That was a time of the "Three Buckets" model which I remember she was a contributor to. The first iterations of Fish Test results As one with a 17p deletion I was placed firmly in the Third Bucket which predicted rapid progress and implied doom.

I mention all this 20 years later to say that informed speculation is not always how things actually play out.

ornstin
ornstin in reply to morepork

I used to be a member of CLL Topics and learnt a lot about CLL from Chaya.. She was/is a very good communicator. I felt a bit sad when she decided to deactivate CLL Topics several years ago.

Very eye opening. I don't like the 1 in 3 chance of me being killed by covid.

Sushibruno
Sushibruno in reply to LeoPa

I have an appt today and my mind is saying don't go😷. IT'S UTTERLY TERRIFYING TO PUT ONE FOOT OUT MY DOOR AFTER READING THIS ARTICLE. (im not shouting at u Leo) it's all very upsetting on top of this dreaded disease.

LeoPa
LeoPa in reply to Sushibruno

Just put an N95 respirator on and you'll be safe. Glasses too. Best wishes!

Sushibruno
Sushibruno in reply to LeoPa

Thank you Leo, I use a95 and a surgical mask at the same time. I hope you're well🙂.

LeoPa
LeoPa in reply to Sushibruno

Well done then😊. I'm fine thanks!

LeoPa
LeoPa in reply to Sushibruno

After this article I feel like putting on 2 of those N95s on top of each other 😂. I'd sure become looked at more often, lol.

Sushibruno
Sushibruno in reply to LeoPa

In gonna tell you a story that I couldn't stop laughing at after it happened🤣. When this covid pandemic started back in March my husband got me a respirator. I think I posted on it here and put a picture up. Anyway I went to the market with it on and i kid you not everyone stared at me like I was an alien🤣🤣. It was hilarious, I like to see people's reactions in something that's not the norm🤣🤣🤣. (I'm gonna take that respirator out of storage. Time to put it to use again.

LeoPa
LeoPa in reply to Sushibruno

I do remember that posted pic 😁👌

Sushibruno
Sushibruno in reply to LeoPa

😂

SofiaDeo
SofiaDeo in reply to LeoPa

Don't forget eye protection......this is an airborne transmitted virus. It's unlikely but possible.

LeoPa
LeoPa in reply to SofiaDeo

Thanks! I have these tight fitting swimmer's glasses. I wanted to put them on during the spring wave. No kidding. They are tinted even. My wife said she'd walk behind me pretending not to know me😂. I gave up and settled for sunglasses. Might try it again now.

Sushibruno
Sushibruno in reply to LeoPa

🤣 why don't u try safety glasses im gonna ask my husband to bring me a pair.

SofiaDeo
SofiaDeo in reply to LeoPa

If they are the athletic sunglasses that have the side blockers to keep air out, that would be best! I use a pair of glasses designed for wood workshops, I buy them at a hardware store. Painter's goggles also would help. Just basic safety goggles. The eyedrops are better than nothing....the idea is, if there is any irritation in our eyes that's a place a virus could theoretically get through our barriers. And with corona-type viruses having those spike proteins, any film barrier on our eyes would stick to the virus. But in windy conditions I like the glasses.

Sushibruno
Sushibruno in reply to SofiaDeo

Good idea. Thank you SofiaDeo.

HopeME
HopeME in reply to Sushibruno

Are you going to see your Specialist? Please go. Take precautions and you will be safe.

Thanks

Mark

Sushibruno
Sushibruno in reply to HopeME

Mark I'm going to see the cardiologist. I've been going to different specialist these past couple of weeks. Thank you Mark.

HopeME
HopeME in reply to Sushibruno

It’s an important appointment so you should go. Unfortunately, there are risks in everything we do but neglecting key doctors appointment is a big risk. It is a balancing act but I’m certain you will do fine. Good Luck!

Thanks

Mark

Sushibruno
Sushibruno in reply to HopeME

Thank you Mark, I value your opinion very much🙂. I know you have your own challenges at the moment and I wish u the best.

I don’t feel that this information is helpful very much at all, especially as it has a lot of ‘unknown’ in it. We have to remain optimistic, hopeful, vigilant and safe. But this piece on reading fills one with dread and negativity I feel, which doesn’t balance out the informative usefulness of it, I would suggest. All in my humble opinion of course, but reading it just made my heart sink, and that’s not what I need right now. As Boris said (silly chap); the cavalry is coming over the brow of the hill, in the form of a vaccine. I just hope he doesn’t mean it’s Dad’s Army😉

I felt quite depressed reading this article. I know it is challenging times for us CLLers but to read such stark words has been quite frightening. I am already locked down to the point that the only outdoor I get is taking rubbish to the bin. When I asked my CLL specialist he said I wouldn't make as good a response as a healthy person BUT that I should make a fairly good response. I shall revisit this question with him next week on my monthly monitoring. I shall ask him if Acalabrutinib is a help or a hindrance to my b cell response.

Oh my God, what a devastating post! I am close to being the hypothetical "Steve". Had 4 Mabthera infusions in March, hospitalized 2 weeks for covid in April (neg test but covid like CTscans of lungs) Did not get POTUS, but antibiotics and sulfa. Slowly recovering during summer and autumn. In mid November evil coughs, neg covid test but in mid December again finally high fever and shadows on CTscans- "covid can not be ruled out". Antibiotics worked and now slowly back on track. According to the post I might have covid hiding in my body, and also be a host for mutations! I do hide from other people, only meet friends outdoors and only go inside for my weekly blood work. But I can't hide from myself!

Vaccination is recommended but with no hope for working. Seeing my grandson IRL- not possible until he can get vaccinated (he is only five years).

My hope for the coming year fell like a stone..........

The one good thing was the recommendation for monoclonal antibodies.

I will ask my doctor. But I doubt that it will be accessable now, when hospitals are full and all doctors busy.

Thank you all previous replies for being more optimistic, they somewhat diminished the threat. We do need to keep our hope and spirit alive!

Christina

I would be amazed if any US physician recommended a patient, other than groups already on the contra list, not to have the vaccine. Ensuing Covid case -> court case.

No one explains it better than Chaya. What a gift she has been.

Hi,

I must admit I found it hard reading. I have always found Chaya a big source of information on CLL.

I did FCR in 2013 and my immune system has unfortunately never recovered and my IGG is still dropping - it is currently 2.4. So far I have been lucky and not picked up infections which is why my local immunology dept will not give me IVIG infusions.

I've spoken with my consultant regarding the Covid vaccine and he has been honest with me that due to my immune system my chance of getting a response to the jab is low. I am unable to have the flu jab as I have had accute cellulitis after it which has required 3 -4 weeks antibiotics after the last two.

They measured my response to the pneumonia jab (2015) and I didn't make a response to that.

I will have which ever Covid vaccine I am offered and will keep my fingers crossed that I will get some response.

I'm still following shielding and will continue to do that as I think I'm in group 4 for the vaccine as I'm 54.

Roll on vaccinations being rolled out and life moving forward again :)

Stay safe,

Louise :)

AussieNeil
AussieNeilAdministrator

I've updated my post to put Chaya's article in a broader perspective, which includes reading cajunjeff's overview post here: healthunlocked.com/cllsuppo...

Neil

There’s an issue here that, after reading virtually every reply, no one has raised; that is, Is it possible, or even likely, that the currently available vaccines for Covid-19 won’t protect people from the multiple mutant strains now popping up around the world? I think of the numerous flu-related strains that we aren’t protected against each year, even when flu shots are available. In the US, what typically happens is that the CDC and related experts get together perhaps 9-12 months in advance to decide on which flu strain they think is most likely to impact people during the next flu season. Then, the pharmaceutical companies roll out vaccines for that. So, what typically seems to happen is that we’ll get a shot for, say, Hong Kong A, but Singapore B ends up ravishing a good part of our population. I can’t help but think the same type of scenario will play out here. Hopefully not, but...

. * As for Chaya’s advice, despite what many others here have written, I’ll pass on the shot and take my chances on social distancing and masks. Actually, I wear a face shield, without a mask (I have breathing issues and am claustrophobic), and believe it protects me more than those who wear masks—likely the same ones day after day, and frequently below their noses. As the saying goes, You pays your money and takes your chances. May you all be blessed with good health, and good decisions, now and going forward.

Justasheet1
Justasheet1 in reply to Pogee

Pogee,

No mask and no vaccine? This new strain is 50% more infectious. Please don’t go outside unless you live in a forest.

Jeff

Pogee
Pogee in reply to Justasheet1

I appreciate your advice, but respectfully disagree with it. Please see my other posts about this.

AussieNeil
AussieNeilAdministrator in reply to Pogee

Pogee, with respect to your concerns about lack of protection from currently available vaccines, experts believe that approved vaccines will still work, but are carefully monitoring the situation. In a similar manner to flu vaccines, some of the new vaccines can be quickly revamped to provide extended coverage of new variants. See healthunlocked.com/cllsuppo...

With respect to your PPE choice, I agree with you about the poor mask wearing habits of many, but I doubt that would include people like you who know that they are immune compromised. If you can't bring yourself to wear a mask, I would recommend you extend your physical safety bubble to 2 metres/6 feet where at all possible, particularly when waiting near others. Remember that some of the (yet unquantified) infection spread is thought to be due to aerosol dispersion, which can remain suspended for quite a while in the air you are breathing when near others.

Neil

Your comments, as always, are on target and much appreciated. * As for new vaccines being able to be revamped to provide extended coverage, I suspect this is very much like playing whack-a-mole, where one is always behind the 8-ball and guessing—frequently unsuccessfully. That said, I'd rather not be a guinea pig or pin cushion. However, I certainly respect other opinions and wish everyone the best. * With regard to the 6-foot bubble, I do try to be quite careful. * As for wearing a shield instead of a mask, I'm aware that particles can remain airborne for an extended period of time. However, I believe I'm more protected with a solid shield that comes below my chin than I would be with a mask which the smaller particles can defeat. * For what it's worth, I spray 70% alcohol on my hands, steering wheel, and other items I've come in contact with, and also use 70% alcohol on a Q-tip up my nostrils, when I feel it's indicated. Just sayin'...

AussieNeil
AussieNeilAdministrator in reply to Pogee

My concern is that a shield's primary protection function is against people coughing, sneezing and talking loudly in front of you. There is no filtering of the air you breathe. Just watch dust motes in a sunlight beam for an indication of how small particles drift in the air and remember that viral particles are much, much smaller still.

I'm sorry that you can't tolerate a mask. That's tough and I can appreciate how doing so could make you feel very panicky - it must be a frightening experience.

Your comments are thoughtful and well taken. Yes, not being able to breath well is frightening. Unfortnately, there are many who have, and have had, much more severe issues than me, so I count my blessings. I would only wish that on my worst enemies.

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