I was on the AVO trial at Dana Farber and achieved MRD negative status after 1.5 years. I have been this way for about 9 months now. Received the Modena vaccine back in January. Anyone read anything, have knowledge as to how us MRD negs respond to the vaccine????
Vaccine response with MRD negative status? - CLL Support
Vaccine response with MRD negative status?
Pete, the bigger issue for you than mrd status is being on acalabrutinib and having had obinutuzumab. Most people, like me, who are on a btk inhibitor like ibrutinib will probably not have a measurable antibody response to any covid vaccine.
From what I have read, the chances of getting a vaccine response for those of us on a CD 20 monoclonal antibody like obinutuzumab (gazyva) are even less. I do not know when you had your last gazyva infusion but it is a b cell depleting drug that knocks out antibody producing cells.
For those who have completed btk and monoclonal antibody treatment and have achieved remission and have stopped all drugs, I would think being mrd negative is a plus with the vaccine. But how far removed from treatment would one need to be to get a an antibody response? That’s anyone’s guess at this point.
Thanks for the input Jeff.. just trying to get information that makes me feel more comfortable about going out and being around “unmasked” people these days!!!! Knowing there is no real answer at the moment, but just hoping.
Pete, you and I might well have some benefit from the vaccine independent of our antibody response. But I sure was hopeful my antibody tests would come back positive to give me more peace of mind. It was not to be.
I am getting out a bit more now, but its a risk not having measurable antibodies. And you might have an antibody response, I am no expert. From what I have read, I doubt you do. Its probably most safe for both of us to assume we have no protection from the vaccine (even though I think we do).
I’m hoping there a a positive spin to this vaccine for the CLLers!! Because if there isn’t, and we do not have any antibodies to help our immunity to Covid, then why bother with the shot at all!!! This is not something I want to hear. One cannot be in isolation for so long!!! Hi
The reason we bother to have the shot is because it might afford us protection and the potential benefit is great while the risk is low. The fact we might have a failed antibody test does not equate to no vaccine protection, they just do not know yet.
Antibodies are only one part of our immune response. It is possible the vaccine is helping stimulate other parts of our immune system like t cells that cannot be measured by an antibody test. And its possible we might have some small antibody response that is not measurable that could turn a serious covid case into a mild one.
In the US we also have access to monoclonal antibodies to treat covid, that is, upon diagnosis of covid, if we act fast enough, we can get an infusion of covid antibodies such that we do not need to make our own.
They are developing tests to look at t cell response and if the vaccines are activating our t cells, that might be all we need.
So there is your positive spin, I just did not want to sugar coat the answer to your question. I think if you are on acalabrutinib that you would probably have a negative antibody test.
Thanks Jeff, just looking for that little ray of sunshine!!!
Hi Pete, Early this January, I completed a similar AVO trial to yours (only mine was 14 cycles/13 months long), having my last Obinutuzumab infusion a year ago in May last year. Flow cytometry tests done since April last year continue to show zero B cells and low T cell counts, with the CD4 helper cells particularly low. I'm still waiting on the results of an MRD test done mid April, but given CD20 monoclonal antibodies like Obinutuzumab and Rituximab keep working for upwards of a year after the last infusion and Venetoclax also knocks down T cell counts, you and I will need to keep taking precautions until there are much better specific tests for the overall immune response to COVID-19 vaccinations. Have you asked for a follow-up flow cytometry test recently? You may find it was already done as part of the trial. The details of your MRD testing probably also include information on your different T cell counts.
Neil
Hello Neil, I had a recent flow cytometry results in April.
Here are summary details: What should I be looking for?
Peripheral blood, flow cytometric immunophenotyping:
No monotypic B-cell population identified.
WBC: 4.2 x 10(9)/L
%Lymphs (CBC/automated differential): 23%
#Lymphs (CBC/automated differential): 1.0 x 10(9)/L
Results:
B-cells: No monotypic, MRD negative; normal pattern of
expression of CD19, CD20, CD5, CD23, CD38, CD45, kappa and
lambda. Hi
You may get T-cell stimulation, that's why you should bother. Plus any B-cells, however small the number, will be stimulated to produce some antibodies. It's just not going to be the number than normal healthy folk make. It may turn out to be the difference between hospitalization & death in us immune compromised folk if we catch Covid or influenza or whatever. Even 1% improvement in immune response may be the difference in some people. Better safe than sorry IMO.
As previously said we probably don't have any antibodies. But we don't know what our T cells are doing as I understand many treatments remove the tumour burden and generally don't affect out T cells and in some cases help them work better. Has anyone had tests for covid specific CD4 and CD8 cells. I know you can get this type of test done privately in US but has anyone have any knowledge where you can get this in UK? Am I clutching at straws I ask myself?!!
Pete,I have heard all different responses regarding the effectiveness Of the vaccine For cllers. My doctor did indicate the monoclonal treatments for covid were very effective and that he has used the and he saw very good responses. I think we have to be careful no matter what but any sign of covid get tested early and monoclonal treatment asap which seems to be much more available today than previous months
Although slightly off point, I asked my team at The Christie whether I could get an antibody test since I’ve had two jabs and been MRD for 5months. They said that the test were inaccurate and wouldnt be a particularly good predictor of how well you might deal with the disease anyway.
I was also interested to learn that any physical reaction to jab (& its severity ) also gave no indication of how well or badly you might be at fighting off the virus. I’ve had my 2 jabs - I’m as scared of this as any other bad infection. Flu almost killed me, so Covid isn’t such a novel idea 😊
Have been MRD negative for 15 months after 10 months or so on ZVO treatment. Spike test came back negative. Good luck.
I am negative also and have stocked up on N95 masks from Amazon. I’m sure we will learn more as time goes by. For the meantime, as devastating as the news was, I think it’s better to know I’m vulnerable and take precautions. The upside may be that if strange variants emerge, we’ll be protected from them too.
My doctor is also at Dana and I was there yesterday. I have been off Venclexta since late January. I was warned not to rely on the vaccine yet. I was told that since I was off Venclexta for a couple months when I received my vaccinations, I may have some response. I believe that being on these drugs will make it difficult to get any response. I am hoping that if I stay MRD negative I maay be able to get a booster later on. Good luck, stay safe. I am not giving up my mask anytime soon!
I agree...things will get better, but while thinking positively we must be cautious too 😀