Concerns about the level of protection of Covi... - CLL Support

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Concerns about the level of protection of Covid vaccine while on Obinutuzimab and Venetoclax.

Leilalala profile image
12 Replies

Hi I have recently had my last infusion of Obinutuzimab, and am taking 300g Venetoclax daily. I still haven't decided whether to have the covid vaccine. Despite people/doctors saying any immunity is better than nothing, I worry that the vaccine may not offer any protection or very little, and am concerned about side effects of vaccine on blood count, platelets etc.

Has anyone following the same treatment as me who had the vaccine and can inform me on side effects and also if you've checked if you have developed antibodies?

Also has anyone in the same situation as me had covid and could describe how it affected them?

Many thanks in advance,

Leila

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Leilalala profile image
Leilalala
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cllady01 profile image
cllady01Former Volunteer

Leilalala, your question of how much protection the Covid vaccine provides is one that is not answerable as we are all different.

While it is true there will be less protection from the vaccine than a healthy person has, and that the V+O treatment causes low neutrophils, this making us susceptible to any infection viral/bacterial/or fungal, not having any of the vaccine in your system makes it certain that you have no protection from CoVID.

What does your Dr. say about your likely protection from COVID without vaccination?

I hope you will at least get the flu shot.

Leilalala profile image
Leilalala in reply to cllady01

Hi thanks for your reply, I was really wondering if I should wait 6 months now to get vaccinated since my last infusion was last 2 weeks ago. My Dr advised me to get the jab but didn't insist when I expressed my concerns. He said he understands.

cllady01 profile image
cllady01Former Volunteer in reply to Leilalala

The possibility of a booster will most likely be while I am in the middle of the Obinutuzumab treatment this fall, and I am wondering how that will be for me, also.

I do know that I will be more isolated as my Neutrophils go south. These are trying times and there are no clear answers. It seems to me every person has to be as protective as possible of both themselves and those who are closest.

The vaccines are available to us now and there are no assurances they will be available at any point in the future with the world's needing them and the supply lines that our societies across the world have grown dependent upon are not working to meet the expectations we have for getting anything we want in a timely manner.

I guess I am saying, when it is available to you is the best time (in my opinion).

Best wishes. We are all in this together, but with each of us in different situations and a lot of need to have some support for what to do next.

Gman2 profile image
Gman2 in reply to cllady01

Hi cllady01, I am scheduled to start the infusions for Obinutuzumab this Tuesday. I was vaccinated with the Pfizer vaccine this past Feb and did have some measurable antibodies. I am anxious about the infusions as well as any vaccine protection being diminished. What was your experience with the infusions and have you started the Ventaclax? Thanks, Gerry

Michaeljohn50 profile image
Michaeljohn50

I finished O+V in March. My Consultant's advice was threefold; get vaccinated, act as if unvaccinated and do not bother with antibody tests. The logic is; any protection that might come from vaccination is a bonus. Continue with distancing and masks etc to avoid infection from Covid. Antibody tests examine only a small part of the total immune system response to the vaccine, T cell response etc is not measured.I am double vaccinated with the AZ vaccine. Minimal side effects, no worse than a flu shot in my case. My opinion, get vaccinated to do your best to protect yourself and others.

Michael

Leilalala profile image
Leilalala in reply to Michaeljohn50

Thanks for sharing. I am very careful indeed. But still concerned over the vaccine and whether I should wait 6 months after my last infusion.

RosettaClapp profile image
RosettaClapp in reply to Leilalala

the research I have read (israeli study its on here somewhere)indicates that 6 months wait isnt going to make the vaccine any more effective

fipo_bahamontes profile image
fipo_bahamontes

Hi Leilala, I did the same aproach as Michael. Got the vax (Pfizer), kept and still keep all precautionary measures high, and did an antibody test. The first vax shot was 6weeks after my last O-Infusion. (+ 400 V Daily) Ididn‘t developed any antibodies. My doctor recommended a third shot with another 6 weeks gap. I didn‘t had side effects. Just an aching arm (like almost everybody I know).conclusion (like Michael):Try it, any protection is a Bonus.

Flute117 profile image
Flute117

I had my last Obinutuzumab infusion in January and had my Pfizer vaccine in March and April while still on Venclexta. My specialist ran the spike antibody test which showed no antibodies, but said my T cells could still provide some protection.

I protect myself as if I have not been vaccinated, but I believe getting the vaccine was the right move as whatever protection it may provide is better than none at all.

I say get it but continue to be as careful as possible.

GrumpyFrog profile image
GrumpyFrog

I finished a course of V+O last October and got the Moderna vaccine in February-March. I had a mild reaction to the vaccine, which is perfectly normal. My oncologist ordered an antibody test and I had no antibody response. My doctors said that does not necessarily mean that I have no protection; the immune system is complicated and there is a lot we don't know about Covid and the vaccine. But I continue to be careful, especially around unvaccinated people.

There is no reason to think the vaccine will have any negative impact on your health. This is a widely held belief that is causing a lot of vaccine hesitancy, but there is no evidence to support the notion that the vaccine can cause any health issues. I would not worry about that.

We cannot know how well the vaccine will work for you, but I agree with clllady01 below. If you don't get the vaccine, it is 100% certain that you don't have any protection from Covid. There is no benefit to waiting, and it increases your risk. So why not get the vaccine now?

RosettaClapp profile image
RosettaClapp

I had my first covid vaccine the week before I started Obinutumazab and the second a month later, goodness knows if its been at all effective but the side effects were a mild headache after the second one,, my haematologist recommended I have it,You dont explain why you are refusing it at the moment

ragged profile image
ragged

I received the Moderna vaccine (2 injection series) during Obinutuzumab infusions and while on Venetoclax after receiving advice to do so from a CLL specialist group. I was told the same things that others here have posted on this, specific to patients receiving O+V. In my opinion, a chance for some immune response to the vaccine is certainly better than none, as others have commented. (I had mild injection site soreness, redness, swelling and localized itching for a few days). Subsequently I have read that patients who receive an anti-CD20 drug such as Obinutuzumab or Rituximab should not expect an antibody response for 6-12 months post-infusion, but that a T-cell response may offer some protection. The good news for me is that I reached uMRD measured by the clonoSEQ assay at 7 1/2 months into treatment, hopefully thereby countering the immune suppression caused by the CLL itself.

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