I need to state out front that I’m not anti vaccination, I believe in the benefits having had several as a kid and now 6 anti COVID doses. But I’m now being bombarded with NHS offers of several different vaccines, COVID, Flu and shingles among them, and it has made me think of possible issues before getting an armful of jabs.
To work from first principles, your immune system works by identifying bad things such as viruses and bacteria, and neutralising them before they cause serious health problems. In the case of viruses, the immune system develops white blood cells, B and T cells, that attack and neutralise specific virus material in the bloodstream (B cells) or body cells after they have been infected (T cells). The purpose of vaccines is to prime the immune system by introducing small samples of a modified virus that cannot replicate, or a known less harmful but similar “live” virus to trigger the body’s mechanism to produce B and T cells. If the immune system is aware of the form of a virus, then it can react more swiftly to neutralise it before it replicates to a stage where is can overcome the immune system’s capability.
That’s fine but CLL sufferers have a defective immune system that produces B cells that don’t work against viruses, and secondly can accumulate within the body causing other serious problems. Not all B cells are defective, particularly in the early stages of the disease, but as it progresses the number of defective B cells increases. My question is, then, at what point does the benefit of having a primed system get outweighed by the reaction to a vaccine introduced virus producing defective B cells? If I get an armful of COVID/Flu/Shingles vaccines will the resultant surge in antibodies, some of which will be defective and be accumulated somewhere in my system, be more of a problem than the risk of catching the diseases they are supposed to protect me from?
I’m currently on W&W (since 2015) so this may not be a major issue for me at the moment but I want to think ahead.
Ian C
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I have received general invites from the NHS as I'm over 65 and individual reminders / invites from my GP surgery. However, no one seems to acknowledge my CLL status, which is why I asked the question. Since COVID struck, I have not seen a consultant, but have had a couple of short phone calls. The staff turnover at the haematology seems quite high, as I have never seen or talked to the same person twice - and the team listed on their headed letters seems to change regularly as well. I did try asking this question in one of the phone calls, but didn't get a meaningful response.
Please get your vaccinations up to date. As you allude to in your post, a CLL patient’s immune system weakens overtime often making vaccinations less effective as the disease progresses. CLL Specialists will tell you to get your vaccinations up to date as early as possible after being diagnosed with CLL to insure maximum protection for the future.
This is exactly how I did it when I was 1st diagnosed. I got the 2 sets of Pneumonia vaxes, the Shingrex set of vaxes, the flu and Covid vaxes all spread out, one at a time over the course of 9 months in 2020-2021.
Even now, I take a vax one at a time, so I've got flu this weekend, and then I'll wait 2-4 weeks before my next vax (which will let me chat with my new CLL doc on which one I should prioritize at my age, and if I'm allowed both winter ones (Covid and RSV), since I'm still under 60).
Hi, I for sure would get my vaccinations up to date, including Shingrix for shingles and the pneumonia ones. When I was first diagnosed I was immediately put under a consultant whom I saw once a year. It was great when nothing thing much was ‘happening’. I also had two nurses with whom I could chat at any point in time. General haematology nurses are great but they don’t know you. I have come to rely on the nurses on many occasions for ‘niggles’ on my mind. I take flu jabs and Covid jabs every year. I don’t want to be that one person who wasn’t fully vaccinated and ended up in hospital. If I have done all I can I am happy. Good luck with your decision
The short version is: as a CLL patient and immune compromised: DO NOT get any live viruses. The vaccines you mention are not live viruses: "COVID, Flu and shingles" and I would add RSV to that list.
IMO your analysis is excellent: Our immune systems are damaged, so it takes more vaccine exposure to develop some resistance from the few normal B cells we have. Our immune system is complex and multi layered, so any improvement will help us avoid more serious infections, hospitalizations and death.
However I disagree with one of your assertions: the defective CLL B cells don't react to vaccines and do not increase with exposure, they reproduce and live longer on their own schedules and do not make defective antibodies.
Len, My concern is that defective B cells don't do anything to reduce viral infection, but vaccination still stimulates bone marrow or whatever to produce B cells (both good and defective) and as a result more defective B cells are accumulating in the system. My question is whether there is a point where the accumulation of defective cells in my system poses a greater risk than the protection a vaccine gives. I see from other responses that a staged progression of vaccinations has been used elsewhere which seems logical but my CLL team have never discussed such an approach with me and my GP surgery has invited me for winter season vaccinations, all of which seem to be planned to be given at around the same time.
I'm not medically trained, but in all the discussions I see daily here, and in many personal conversations with the top CLL experts and immunologists at several New York hospitals, I have never heard that vaccines stimulate the bone marrow to make more CLL cells. If you have a link to a source or reference that mentions that, please post it and I will enthusiastically read it.
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One place you might try for validating or debating your hypothesis is YLE- see this post
I have certainly wondered the same Ian, but I don't *think* it is a concern and here's why. I do hope I've got this right.
Vaccines act on naive B cells, which are then activated to go through their natural life cycle to produce antibodies. But our CLL involves mature B cells, not naive ones.
All of our CLL cells descend from one original bad cell (which is why they say we have a CLL 'clone' and sometimes a 'subclone'). That original bad cell was a mature B cell that had already been activated, so was past its antibody producing days. New CLL cells come about by being cloned from existing ones in the lymph nodes. And they proliferate mainly because they don't die off naturally as they should.
"CLL sufferers have a defective immune system that produces B cells that don’t work against viruses" is not necessarily true. We have as a group, impaired immunity. Exactly how that translates is a very individual thing.
Since studies of the Covid virus indicate our T-cells are also playing a role in vaccination, until there is hard evidence saying otherwise, both these factors lead to a general statement "talk to your doctor about getting the vaccines against everything". It's a decision one needs to make on a case by case basis.
I'll also mention your second paragraph is a bit oversimplified IMO. As we get exposed to organisms on a daily basis, our immune system is often stimulated. We also make antibodies, not just B & T cells. General immune globulins can get stimulated. Not just when we get vaccinated. And these antibodies and immune globulins are not necessarily defective. It's the B cells that aren't responding "as they should", which in CLL is often more along the lines of "they don't die off as normal, and this leads to problems". So one can't say "everyone won't make antibodies" or "everyone will get vaccine side effects." Your points are valid, and some people have discussed swelling nodes after vaccination. It's why one needs to discuss it with your doctor.
Plus the concept of "viral load" when speaking about viral infections. Exposed to a small amount, we generally fight it off. Larger loads may not be fought off so easily. Immune compromised may not respond. The vaccines are for organisms that tend to cause disease with even moderate exposure instead of being successfully fought off. Otherwise, we would be getting vaccinated for Candida and Aspergillis, Staph and Step if we didn't have an immune response to organisms on our environment. For bacteria, one may excise/drain an area to decrease the bacteria count in a tissue, instead of just taking antibiotics. So our system is constantly being stimulated in some respect, on a daily basis. It may turn out that people with largely uncontrolled CLL have some of this "defective cells keep building up as the marrow gets stimulated" but I am not aware of any data backing this.
Hi Ian,CLL cells don't live forever, they just die less often than they clone, so in general, our tumour burden increases over time. The IVGH gene sequence that produces the B Cell Receptor that responds to viruses etc can be unmutated or mutated, that is, the receptor can be stimulated generally, or specifically by a given pathogen. Importantly, as others have shared, CLL is a mature (chronic) B cell Lymphoma. CLL cells get stuck at stage in their life cycle that is similar to that of a memory B cell; they don't mature into the final immunoglobulin producing plasma cell stage of the B cell life cycle. We don't get a build up of immunoglobulins, in fact we generally experience the opposite - reducing immunoglobulins (hypogammaglobulinemia). It's Multiple Myeloma,, the blood cancer of clonal plasma cells where people can get a dangerous accumulation of immunoglobulins. Also immunoglobulins all have a half life from days to weeks, with IgG lasting the longest, with a half life of about 3 weeks.
Of note, the just released Standardised guidance for the the investigation and management of CLL in Australia and NZ has this to say about vaccinations when we have CLL
Just adding to my reply to note that your adaptive immune system (your B and T cells) respond to pathogens in every breath you take, everything you eat or drink, every cut or scratch you have and so on, not just vaccinations. If our B and T lymphocytes didn't die and our body gradually also recycle our immunoglobulins, then indeed we'd accumulate more and more lymphocytes and immunoglobulins. Also, CLL cells are small and are very unlikely to interfere with circulation. As theStandardised guidance for the the investigation and management of CLL in Australia and NZ I referenced above notes, "leukostasis is rare even with markedly elevated lymphocyte counts". The highest count I know of in a CLL patient was 1,400 (normal range is around 1.2 to 3.5).
That standardised guidance document also notes that "Infection is the leading cause of death in people with CLL", so doing what we can to reduce our likelihood of serious infection is the major means available to us to live out our normal life expectancy. The US SEERs database seer.cancer.gov/statfacts/h... is the world's best database about CLL diagnosis and survival and you'll note from that link, the continued improvement in life expectancy over the last 30 years. That improvement is due to better management - primarily infection management; we are yet to see the impact of targeted therapies on life expectancy.
Thanks for all the comments, which I've found to be very helpful. As CLL is a disease related to our response to infections, my general approach has been to avoid potential sources where possible - such as crowded indoor areas. I understand that the body is constantly exposed to infections/pathogens daily but actually exposing my immune system to a source of "infection" seems contra - intuitive. To quote from the helpful Patient Information book from the (UK) Leukaemia & Lymphoma Research organisation, I was given by the NHS in 2015, "If you have CLL, your body produces too many lymphocytes that don't work properly. They then build up in the bone marrow, which means there isn't room for enough normal blood cells to be made", so in my view increasing demand by introducing an "infection" isn't the best thing. I am being told to have vaccinations ("infections") for COVID, Flu, Pneumonia and Shingles, and I am concerned that having all more or less simultaneously (along with normal daily exposure to potential infections) may be an overload. The suggestion to stage vaccinations over a longer period of time sounds better for me at least, and I will take this up in my annual phone call with my CLL consultant, which is due next month.
Well, Sod's Law quickly intervened. Tuesday evening, a sore throat and headache. Wednesday morning, a COVID test proved positive. We broke our policy of only shopping early in the morning (around 7am) to avoid busy periods to get a few essentials Sunday afternoon - when the local supermarket was very full of parents and kids in tow. I'm now awaiting reaction from my GP who has been contacted by NHS 111 to give me a for a full assessment for antiviral treatment.
I'm actually up to date with COVID vaccines (6, last one at the end of April) so I suppose I can knock COVID off the list of Autumn vaccinations as I have the genuine article....🤣
I imagine that your invites are personalised but you still need to ensure they give you the non live versions eg with shingles vaccine it should be shingrix.
I have a feeling that the nhs is swapping to shingrix anyway.
By being personalised, I mean that a very clever algorithm drives the vaccine invites. It can tell what age you are, that you have CLL, what you have had already. If there are two versions of a vaccine, it can’t choose one for you. That is something you need to remind people.
If the only alternative on the nhs was a live vaccine it would likely not invite you.
It’s a good algorithm as any dr would have to have a computer in their head to work out who needed what, when.
But always remind someone, and discuss, when you see them as all information about you helps, and computers are only as good as the information entered. For example I’ve not been able to have the vaccines during my V@O cycle so I just ring them and let them know. Thank fully they have kept sending reminders so I know what everyone else is having.
Over a certain age the shingles and flu reminders are automatic - whether we have CLL or not. However over the age of 79 only the immunosuppressed will get reminders to have the shingles vaccine if they haven’t had it lol! That has only happened recently thanks to the campaigning of organisations like this.
So they are personalised, but they are also sent over a certain age because they protect people over that age. Between about 65 and 79 the invites are essentially the same for all of us.
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CLL Meets COVID Vaccines/ Dr. Brian Koffman's take
*IMPORTANT* ALL COVID-19 Vaccines are thought to be safe for CLL Patients- they are NOT live vaccines and cannot cause illness
