Do CLL patients have protection against COVID ... - CLL Support

CLL Support

17,978 members29,490 posts

Do CLL patients have protection against COVID post-vaccination?

Rmiller32x profile image

There is apparently no data on this very important question, as cancer patients were excluded from all the trials. My hematologist believes, though, that we will have little to no protection. What are you hearing?

11 Replies

The short answer is, 'Nobody knows'.The longer answer would be: Everyone's CLL is at a different stage with different cytogenetics. Either W&W, in-treatment or post-treatment. IgG levels will vary; some in the standard range and some below the range. Some extremely below the range but not receiving IVIG. The variations could go on.........

Most specialists say, 'Have the vaccine', but they don't really know. They have professional reasons to hedge their bets.

Your haematologist said, 'Little or no protection', as did mine. She is an old no-nonsense pragmatist and says what she thinks.

Here in Oz, COVID is currently under control and the containment protocols are well established for when it tries to spread from overseas returnees. So we have the luxury of awaiting some of the research on whether there is a better vaccine for those with CLL, and what its efficacy may be. Also there may be a modified variant vaccine available by then. So I'm hanging back in anticipation of some evidence based medicine rather than the opinions we generally hear within the medical profession.

Rmiller32x profile image
Rmiller32x in reply to seelel

Weill Cornell in NYC is currently running a study with their CLL and related patients to test vaccine generated antibodies. I took an IgG antibody test post-vaccination but was told it’s the wrong test as it measures antibodies from having had Covid not the vaccine. We’re all in limbo at the moment

Superdad3 profile image
Superdad3 in reply to seelel

I was told the same thing at Weill Cornell and truly nobody really knows. My opinion is there is so much focus and efforts on both vaccines and treatments that for cll and others at high risk at some point we will be able to be more protected

Even the studies now in progress won't provide an unequivocal answer for all CLL patients. The advice that makes sense to me is "Hope that you have some protection, behave like you have none".

Since there is no data on what protection Cll patients get from covid vaccines, it is beyond me how any doctor can make some blanket statement that “we” will get little to no protection from the vaccine.

It is certainly true that, on average, people with Cll do not respond as well to vaccines. But we do get responses in varying degrees to pneumonia and flu vaccines. And the responses we get are variable, as one might expect, with those in earlier stage Cll doing better than those in later stage.

We have an impaired immune system, not no immune system. A very encouraging sign with the covid vaccine is it’s amazing effectiveness in older people who generally do not do as well with vaccines for the same reason we do not, they have less robust immune systems.

So if we are going to use how Cll patients do with vaccines in general as a measuring stick since we have no specific data on Cll and covid vaccines, I would argue there is a good chance we get more protection from covid vaccines than other vaccines. Covid vaccines show higher effective rates than do flu vaccines, and do better in aging populations.

Even in the cases where the vaccines have not prevented covid, they have turned serious cases into milder cases. So any protection we get at all can be life saving.

I think it fair for a doctor to tell someone with Cll that you should not assume you are getting protection from the Covid vaccine and remain vigilant. I think most Cll doctors at this point would say people in early stage Cll are likely to do well with the vaccine, those in later stage Cll not as well, and all sorts of in between.

If there is no data specific data on Cll and covid vaccines, why assume the worst outcome of little to no benefit? Upon the advice of my Cll doctors I have had Shingrix, pneumonia, flu and now covid vaccines. The slightest protection I get from any of these vaccines might be beneficial to me. I fully expect to benefit from the covid vaccine.

JigFettler profile image
JigFettlerVolunteer in reply to cajunjeff

Jeff - have you asked for post vaccine testing for those vaccines you have?

My Haem Team asked for my Pneumococcal immunity to be tested. Interesting - that was just pre Lockdown #1 UK - so I have not been able to follow up. Only a 3rd Pneumovax.

As I understand it - even if we have the cell numbers and the proteins (T, B and Igs etc) that are vaccine "wised up" - so to speak - no way of telling that will do anything even if staring the virus in the face.

I agree with all say - yet I know that I cannot know IF I, me myself, have any of my own protection.

OK. Since FCR - when my Ls and Ns were zero and 0,3 respectively. Igs very low too btw. I got no infection despite 6 respiratory infections in my wife and daughter - same house. (Pre Covid)

I took reasonable precautions only. I have had no infection since diagnosis 5.5yrs ago.

How can that be?

I have asked of a couple of CLL Dr experts an explanation. There is not one. Possible good T cells...

I am counseling caution And its not just Covid lets not forget. Influenza as well, PJP and Herpes and a host of bacteria. Curious that Influenza despite having a very significant infection impact, and a vaccine, never generated this level of scrutiny. No bad thing. We are all wiser. And that is good.

How is Texas? Have you got all your power back?

Jig

cajunjeff profile image
cajunjeff in reply to JigFettler

Jig, I have not asked for any post vaccine testing nor has it ever been offered. I did speak to my doctor at MD Anderson and as of right now there is no testing he is recommending I do on the covid vaccine. He seemed optimistic that I would benefit from the vaccine.

I never really lost power during the ice storm, my home generator kicked on and worked until power got back up. It did delay my trip to Houston, but Houston seemed business as usual last week.

Covid is such an odd virus in the way that some people get zero symptoms from it. I do not think it is a simple as measuring antibodies and t cells. Some people, including us with cll, might have genetically disposed to have mild or no cases, or disposed to have serious cases.

All the vaccines are so good at preventing serious covid cases even in those who get covid that I have to believe most all of us with cll will get some protection.

I am no doctor, but someone on here just linked to a patient power article where the doctor seemed to say as a matter of fact he expects cancer patients to get some protection from taking the covid vaccine.

Jonquiljo profile image
Jonquiljo in reply to cajunjeff

As usual, Jeff has it right! We really are a group of immune compromised patients on a spectrum. If you are early on and/or have low numbers - you can expect to have a very good response from the COVID vaccines. Others who are farther along will have less of a response, but still a response.

Look at how many among our ranks have contracted COVID and beaten it!

Then we come to our T-cells. Chances are our t-cells give one hell of a response with these vaccines.

First we were worried that no vaccine would be available. Now, we worry that they won’t work for us. We need to keep caution, but understand that once fully vaccinated we may have one fairly good immune protection to COVID. Until I see real data to the contrary - that’s what I will believe.

Be careful drawing conclusions from data when it does come out — medical journals tend to be full of Poorly done experimental work. It’s just the way it is.

clladytime profile image
clladytime in reply to cajunjeff

Thanks for your positive attitude and message. There is so much negativity about our response to the covid vaccine that it is refreshing to hear otherwise. I certainly hope we have a good response to the covid vacccine as well as to all the other vaccines we receive!

I find that haematology consultants tend to be very busy, and if you are moreorless okay, they will also be seeing some patients in a crisis.. What they would / should likely say, if fully focused on our basics?

That we are an immune compromised patient, usually with a changing immune situation through disease progression, treatment, influence of other minor infections.. where immunity is always complex, and very difficult to assess in CLLers.

CLL rule basics: adjust your life/behaviour to be more infection risk savvy - take steps to avoid infections.. this applies to food safety, to not sharing towels, to avoiding crowded spaces with poor air filtering, etc etc.

My behaviour changed during/after treatment.. I caught RSV whilst being careless — that was a really bad time.

Today I am far more aware of air quality mitigations.. of air filters, ventilation, etc. - I will ask venues / businesses that I visit about their air quality measures.. I will aim to avoid risky places, and to prefer less busy places, and those with better air quality/infection mitigation in place.

Research is going on to look at COVID19 vaccination results for immune compromised patients, but that won’t give our own personal answer.. we most of all need to adjust to more caution.. Get the recommended vaccines, hope they help.. getting them before treatment may help more..

Any updates to the question of post-Covid vaccination protection for CLL patients? Is there a commercially available test for post-vaccination neutralizing antibodies?

You may also like...