I have two papers in front of me, the preprint of the Birminham trials papers.ssrn.com/sol3/papers... and an earlier paper first authored by Adrian Hayday on the relative immune efficacy of BNT162b2 for CLL patients and controls.
Both report a significant decrease in response to the vaccine(s) for CLL patients compared to controls.
It occurs to me that there might be many CLL patients who do not keep up with these findings. The 0.5% incidence of CLL in the general population means that there are approximately 50 CLL patients in my local GP practice. So far as I am aware, nobody has been contacted by this practice to alert them to the significantly decreased immunity compared to the figures that hit the newspaper headlines.
We are also under the care of the hospital haematologists. Is it they who should be contacting patients?
The middle letter of NHS stands for Health. There does not seem to be any proactive measure to maintain health for those CLL patients who have been vaccinated but whose immune response is deficient.
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nigeldodd
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There is definitely no sense of urgency to do something about it. This is why it is so Important for CLL patients to be proactive. The best we can do for ourselves is to keep masking up😷🥺
Abstract
Background: B cell chronic lymphocytic leukaemia (CLL) is associated with immune suppression and patients are at increased clinical risk following SARS-CoV-2 infection. Covid-19 vaccines offer the potential for protection against severe infection but relatively little is known regarding the profile of the antibody response following first or second vaccination.
Methods: We studied spike-specific antibody responses following first and/or second Covid-19 vaccination in 299 patients with CLL compared with healthy donors. 13 patients underwent a standard interval (3-week) vaccine regimen whilst 286 underwent extended interval (10-12 week) vaccination. 154 patients received the BNT162b2 mRNA vaccine and 145 patients received ChAdOx1. Blood samples were taken either by venepuncture or as dried blood spots on filter paper. 267 samples were taken at 5 weeks after the first vaccine for patients on the extended interval regimen and 13 and 42 samples were taken at 2-4 weeks after the second vaccine in patients on the standard or extended vaccine regimens respectively.
Findings: Spike-specific antibody responses were detectable in 34% of patients with CLL after one vaccine compared to 94% in healthy donors with antibody titres 104-fold lower in the patient group. Antibody responses increased to 75% after second vaccine, compared to 100% in healthy donors, although titres remained lower. Multivariate analysis showed that current treatment with BTK inhibitors or IgA deficiency were independently associated with failure to generate an antibody response after the second vaccine.
Interpretation: Antibody responses after both the first and second Covid-19 vaccine are lower in patients with CLL compared to age-matched donors. This is particularly marked in patients who are taking BTK inhibitors or have serum IgA deficiency. Further approaches such as repeat vaccination or administration of prophylactic antibody may be worthy of investigation for some patients.
Everyone deserves and wants the best health care possible. I think we all share that wish. So does everyone without CLL.
From your post i dont think you have any idea of the crisis facing primary care and the firefighting they are having to do to provide care for all their patients. There are too few doctors and too few nurses and people are presenting with complex and terminal conditions that would previously have been picked up earlier and would have been much more manageable. Please turn your obvious anger towards the policy makers that have underfunded the service you deride with cheap wordplay, have failed to recruit and retain staff and even now facilitate covid circulating at levels that make it a genuine risk that you will come into contact with it each day.
I promise you your anger is misdirected at the actual NHS and you seem to be under a few misconceptions.
CLL is not present in 0.5% of the UK population. Roughly 3800 people per year in the UK will be diagnosed with CLL. 2010 figures had a total number of alive UK people with a CLL diagnosis (within the previous 30 years) as 20,200. With a UK popn of 62.5 million that puts it as about 0.032% of the population. If 1 in 200 had CLL you would find specialist centres dotted all over the UK and specialist CLL doctors very common.
I only mention this because it matters and pertains to your argument that primary care physicians should be diverting their time to giving you personalised advice. Taking your figure it is likely in reality that there are 3 patients in your surgery with CLL. There will be many many more with other conditions that will also leave them unprotected by the vaccine. Depending on who you believe thats around 10% or, in your surgery, around 1000 people.
Your problem shouldn't be with the NHS. It should be with the government. They could circulate a list of conditions that make vaccination very dubiously effective. They could put support in for them to shield. But no, all they want to do is tout the high % efficacy of the vaccine and you fall for it and blame doctors and nurses.
Who should ring you and every other immunocompromised patient? Presumably not a receptionist as you'd rightly want someone with medical knowledge to tell you to put your life on hold indefinately. So you presumably want a doctor or at least nurse to ring you and the millions of other immunocompromised in the same boat.
They don't have time to do central governments job. They are too busy mopping up the horrific mess that has been created by that central government. Be angry at them. Be very angry at them. But do not take shots at medical professionals that are already flat out. For what its worth its notable that the Scottish govt has sent out a letter to people like us telling us that we are still vulnerable.
My own wife finished at 7pm. Her shift supposedly ended at 5pm and she hasn't stopped all day and won't get the hours back. I haven't asked but i doubt she's been doing anything mundane. She increasingly deals only with people whose first diagnosis is terminal. Everyone she sees is in real trouble and almost every single one of them will be in the same immunocompromised state as us.
Frankly i am pretty hacked off that you think her or people like her have the time or obligation to start ringing people to give lifestyle advice instead of or as well as caring unpaid for the dying and seriously ill. Again, take the real issue up with your MP. Campaign for them to recruit extra people to disseminate unpleasant info to those that need to hear it.
Medics are better people than you or I. They treat people to the best of their ability whenever and however they need it. Their time is finite. I presume your GP and your haematolgist would dearly love to give all their patients full health advice about a variety of serious risks but you are living in a fantasy world if you think they have the time and a world of unicorn dreams if you expect CLL to take precedence over everything else.
Wow. I couldn’t have said it better myself! Your NHS does pretty well from what I can see from Boston or said more accurately from what I read on this board from UK CLL patients who use the system. I’d also add that though we are approaching a year and half into the pandemic a lot still isn’t known about Covid. People shouldn’t be so critical of the UK government. They have their hands full. The bottom line is we have compromised immune systems and we need to take personal responsibility and act accordingly. There are no easy answers here. It is a difficult situation that was thrust upon everyone. Be nice. I agree there are a lot of healthcare and government employees working day and night trying to help their fellow citizens. They are doing their best.
Strube, I think your reply is unnecessarily aggressive, apparently at least in part because your wife had a difficult shift.
The problem with such an angry reaction is that it will deter some people from posting what to them is a reasonable opinion. I think that anyone should be able to post a genuine opinion and have it discussed in a civil manner (or ignored if you prefer).
It would help if you took time to calm down next time before shredding another member. As Brian Koffman says, we're all in this together.
My wife's difficult shift was merely a lazy convenient analogy to illustrate my point. It wasn't unusual to her. It isnt unusual to many many UK healthcare workers on a repeating daily basis. It barely registers with her anymore or me.
Where you are correct is that it was an angry response. Genuinely angry at using unchecked figures to illustrate a stance that CLL patients are somehow more important.
We ARE all in this together. I just think it is wrong to try to draw a line at CLL patients being all. That is, by default, to the exclusion and detrìment of others. I'm all for a supportive forum advocating for CLL patients. I'm very much against an insular "us against the world" situation that starts from a standpoint that CLL patients are effectively being discriminated against by the NHS.
As i said last night i think Nigel has every right to be angry. But be angry at the right people. Ministers don't want a debate on the morals of opening a society with high transmission rates of a virus that will still be devasting to hundreds of thousands despite vaccination. Vaccinating your way out of an active pandemic has never really been tried and it needs to come with an understanding that many many people will be left behind and many will die.
That is a very uncomfortable truth that really should be a huge debating point but isn't. Blamimg the NHS for the lack of debate and protection feels very wrong to me. For clarity im not even sure where i stand on the debate. I can entirely understand the protected majority wanting their lives back. I am sure though that any decent democracy should be willing to have the open debate about just how many are left behind and whether thats ok. A tiny part of that debate leads me to be very angry that Jim blames his GP and not the government for the danger he is in. It gives the people who are actively making the decisions a free pass.
I am also all for debate about where resources should go particularly in unprecedented times of demand. That debate should start and end with a cold hard assessment of best results per pound spent. There is a dishonesty pervading all of UK political debate including healthcare where people are being told they can have it all. The truth is more likely to be the opposite over coming years.
The debate definately should not start with bogus facts. Advocating for CLL resources is good and advocating for yourself is good and empowering. Arguing from a standpoint that CLL is much more prevalent than it is is not a good base point and will not help anyone.
Anyone is absolutely free to post as many theories and wish lists as they like in my opinion. That is basically the internet. But by the same token I will still feel free to defend friends and former colleagues when i perceive that they are being unfairly villified by nonsense.
His opinion made me angry. My opinion probably made you angry by the sounds of your response. My anger starts and ends at his bogus point and does not extend to him. I wish him and yourself nothing but the best but I don't take your point that wrong posts are best left unchallenged and that you should just shrug and walk on by. You haven't done that with my post and i wouldn't expect you to if you feel strongly enough.
Fortunately, you have found this site amongst others like perhaps Cllsociety and Patient Power, to stay up to date on what is the latest with Cll stuff.
My local hematologist, who is 84 y/o was surprised by my lack of antibodies. He is old school and my specialist at MDA does the heavy lifting.
I get that your frustrated at your vaccinations response but mine was the same as yours.
Vent here anytime but expect some counter discussions to your point.
CLL is such a rare disease we need to be our own advocates. That is why forums such this and the CLL Society (CLLSociety.org) are there- primarily to educate. But at CL Society we are also working on studying our T cell responses to vaccines, looking at real world data as to our breakthrough infections post vaccine, adjuvants, boosters, new and repurposed therapeutics, and especially monoclonal antibodies. We will find a way out. Stay strong, we are all in this together, Brian
I agree with you on one thing: the Government hasn't kept us fully informed. But to be honest, it's the general public's lack of knowledge that frightens me most. No-one I meet seems to have realised that there are lots of people like us who appear not to have a real solution with the vaccinations. In fact many seem to feel being double jabbed means they and everyone else vaxed, is immortal.
And echoing Strube we all need to save our "anger" for the government not our truly stunningly dedicated NHS.
You are all speaking as if you are unaware of Blood Cancer UK’s collaboration with the British Society for Haematology’s letter to GPs and haematology teams in the UK last week, asking for immunosuppressed patients to be informed of their diminished likelihood of developing immunity from their vaccines. You will find the letter if you look in the obvious places.
Maybe you should vent your spleens (sic) at them?
** EDIT **
As requested, bennevisplace , I have struggled through to find a way to provide a link, and fingers crossed, this will work!
I can, but I didn’t as I wasn’t sure it would be courteous to post links to competitors’ content?
Hmm, spoke too soon. When I said ‘I can’, turns out ‘I can’t’! I’m struggling to find a way of sharing it from my phone. I’m sure it’s my lack of technical know-how! BUT.. if you search for ‘Blood Cancer UK’s page on FB (I know you know where that is!) , and scroll down their timeline to a post 5 days ago about ‘Speaking to your doctor…’, you’ll find it. When I get back to my desktop, I’ll try again.
Thanks, I'm sure there will be interest in reading the letter and possibly downloading it.
I myself have posted links to Blood Cancer UK without censure. They and our affiliated charity CLL Support UK are co-members of the Blood Cancer Alliance.
Oh, yes! It's the letter, anyway. I think I have just uploaded it, with a snapshot of the accompanying text from their FB post. Can't believe it was so difficult! Thank you for your help. x
Thanks for the replies. I am sorry for your personal circumstances, Strube. I will be brief. My concern is primarily for the CLL patients who do not keep themselves informed by reading forums like this, or by reading the literature for whatever reason. They could easily believe they have the immune response to the vaccine reported in the newspapers when they do not. This could, in the worst case, prove fatal.
It is important to address both what is important as well as what is urgent, and this applies in a healthcare context. As well as saving lives and suffering, the savings in cost to the NHS of preventing just one or two hospitalisations could easily be greater than the cost of advising haematological cancer patients of their diminished response to vaccination, a win-win situation for both CLL patients and the NHS.
CLL patients visit their doctors at least on an annual basis and for the truly impaired (in treatment, prior treatment, escalating WBC, etc.) much more frequently than that. Hence, the message is getting out to these patients that their vaccine responses could be suboptimal at these appointments. Therefore, I don’t think additional outreach by overburdened healthcare workers is required. Stay well.
This man was still “w&w. Perhaps not seeing his specialist since precovid. Then sent home without any extra treatments like a monoclonal antibody infusion and SURPRISINGLY he passed away a few days later.
This happened to a affluent senior man with concerned family around him in Chicago, were they are supposed to have excellent hospitals. I don’t think the word is getting out.
My local hematologist who follows me, rather triumphantly, pulled his mask off and then attempted to shake hands.
“You had both vaccines” he said.
His jaw dropped when I produced the LabCorp results.
We are like no others when it comes to this insidious virus and if the doctors don’t know then it’s time they did.
How to get that done is another issue 😉
This case was obviously in the US and not directed to the NHS but certainly can be brought to the attention of the powers that be?
That poor man was failed by not only being led to believe that he would respond to the vaccine but also SENT HOME without a monoclonal antibody infusion. May he rest in peace.
I think (hope) I have uploaded the text from the Blood Cancer UK FB post I mentioned earlier, concerning their collaboration with the British Society for Haematology letter to haematologists and GPs in the UK, suggesting that blood cancer patients should be informed of their continuing risk in spite of their vaccinations. The intention, of course, is to facilitate patients to make informed decisions about Covid-safety, and protect against breakthrough cases and unnecessary deaths.
I'm reloading it here in case it gets lost in responses to previous comments.
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