Ibrutinib : Anyone on ibrutinib been told the... - CLL Support

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Ibrutinib

Denzel42 profile image

Anyone on ibrutinib been told the covid vaccine won't help them. Been on ibrutinib for 7 months and haematologist said I could have the vaccine but it wouldn't help me.

Just interested. Thanks.

37 Replies

No one I know that is on Ibrutinib has posted that information. Doctors have no idea. Where is your hematologist's proof/study on this? This is new territory.

Can get spike protein semi Quantative antibody test 2-3 weeks after to see if you built up any antibodies against covid.

Definitely worth getting vaccine. We never know if flu, pneumonia or shingle shots work....we take them hoping they prevent us from catching or reducing side effects. 💪💕

Keepkicking profile image
Keepkicking in reply to GMa27

Please go gentle. Denzel42 is only asking a question-- not making a declaration. If doctor's "have no idea", this is uncharted territory for us all.😊

GMa27 profile image
GMa27 in reply to Keepkicking

I was referring to his doctor for proof. I am always kind. Whenever I report a fact that is not the norm, I am asked for proof. I wanted the poster to know to challenge his doctor further and ask- where is the proof. I was simply answering the question. Saying a vaccine won't help is a huge topic.

Kingfish6 profile image
Kingfish6 in reply to GMa27

Your reply was fine & yes, get an anti-body test.

SofiaDeo profile image
SofiaDeo in reply to GMa27

A number of clinicians are stating these tests are only effective in assessing actual disease antibody response, not vaccine response.

cdc.gov/coronavirus/2019-nc...

academic.oup.com/femspd/art...

fda.gov/media/141550/download

This Washington Post article explains it less technically:

washingtonpost.com/lifestyl...

i take ibrutinib,venetoclax,and obintuzamab. My doctor told me to get vaccine. I don;t think they really know-1 way or another.

Newdawn profile image
NewdawnAdministrator

The haematologist obviously hasn’t factored in a possible T cell response from having the vaccine. He doesn’t have enough data yet to make such a definitive proclamation. Nobody does. I’ve had it and viewing it positively though realistically.

Newdawn

Was told by the haematologist to get the vaccine, however, she also said that she couldn't guarantee a response, but if vaccinated, then any response would be better than refusing the vaccine and absolutely guaranteeing no protection.👍

I am on ibrutinib and my Cll doctor recommended I get the vaccine. Ibrutinib is an immunosuppressive drug, so it could dampen any immune response to a vaccine. I think it fair for your doctor to say ibrutinib might make the vaccine less likely to work. I don’t see how he can say it won’t work. The only way I can think of to know that would be to do a clinical trial of people with Cll on ibrutinib, vaccinate them, and see how they do.

Another thought would be to pause ibrutinib for a couple of weeks , do the vaccine, and jump back on ibrutinib. Some doctors are more comfortable than others in pausing ibrutinib.

Artist123 profile image
Artist123 in reply to cajunjeff

They are establishing just that at the Huntsman Cancer Inst. Don't think it's been put in place just yet, but was told by my doc at my appt last Monday to check in after second shot. Haven't had my first shot yet, but have registered. Once I complete the second, I believe they will be testing for antibodies 1, 2 & 3 months afterwards.

i'd ask the doctor if he actually had patients this happened to or where the info is coming from.

It is strange to me that I have had two nurses (one, an oncology nurse) tell me that masks do not work to prevent Covid. And recently a retinal specialist nurse told me that the vaccine doesn't work. It makes me a bit angry that they say things like that.

Yes, a blanket statement that masks do not work is irresponsible. It's true that some kinds of mask work better than others in particular settings. I'm still amazed to see hospital nurses wearing cheap permeable masks all day.

Big_Dee profile image
Big_Dee in reply to lindalou5

Hello lindalou5

I don't wear a mask because of covid. I wear a mask because I have cancer of the immune system and wearing a mask is not 100% effective, but still better than nothing. I also wash hands and carry hand sanitizer. As for shot, your decision. Blessings.

Sounds like you need a new hemo. That is absurd.

lindalou5 profile image
lindalou5 in reply to

I am stuck in an area where many believe this virus to be a hoax, even though we had the highest cases in our state at one time.

Yes one can see the case rate as a consequence of attitudes. When the latter are baked in, hospitalisations and deaths become fake news too.

Hi, I was told by my CLL specialist to definitively get the vaccine, although she wasn’t certain how effective it would be, I am also on immunosuppressive drugs. She did say that I should practice mask wearing, hand washing and social distancing, even with a vaccine. She felt the most effective thing for everyone was that once the majority of folks were vaccinated it would get us to some sort of herd immunity.

Although as Cajunjeff notes, Ibrutinib (like other treatments) is immunosuppressive, there is some evidence that the drug helps reverse the exhaustion of CD8+ T cells often seen in advanced CLL frontiersin.org/articles/10... and functional CD8+ T cells are a vital weapon to combat an active viral infection nature.com/articles/d41586-...

Having the vaccination may give you some protection against Covid infection, so what's to lose? Having a post vaccination antibody test may or may not reflect a protective antibody response (see SofiaDeo's reply), so doubtful value in that, and anyway the test tells nothing of T cell immunity.

When I was first diagnosed in 2013 the oncologist told me “no vaccines of any kind”

AussieNeil profile image
AussieNeilAdministrator in reply to Bunnie1

Are you sure it wasn't "No live vaccines of any kind"? That advice makes much more sense, because our weakened immune systems may succumb to live (attenuated) vaccines.

Bunnie1 profile image
Bunnie1 in reply to AussieNeil

Maybe so. Thanks

AnneHill profile image
AnneHill in reply to AussieNeil

Is there any chance that ivig could contain antibodies to covid?

AussieNeil profile image
AussieNeilAdministrator in reply to AnneHill

Most definitely, but given the time from collecting the plasma to the infusion, I expect that amounts will be only be beginning to appear and it will be a while before there's enough to help. Given antibody production in healthy people seems to drop off after 6 months or so, there may not be much benefit, but any additional assistance is appreciated :) .

AnneHill profile image
AnneHill in reply to AussieNeil

I will be hopeful. I have ivig tomorrow and every 4 weeks. I have my blood taken every 3rd month. I hope its not a silly question but will a blood test taken tomorrow show any difference. It will be 3 weeks since the first jab.

AussieNeil profile image
AussieNeilAdministrator in reply to AnneHill

You might see an uptick in your IgM and perhaps IgA and IgG. IgM is the first immunoglobulin to be produced from new plasma cells, resulting from vaccinations or infections.

AnneHill profile image
AnneHill in reply to AussieNeil

I will ask about it. Its another 7 weeks until I have the 2nd jab. If I have a reaction, I will hope my body has made antibodies.

I cant imagine I will ever be able to hug my friends. Thankyou for your help, Anne uk

SofiaDeo profile image
SofiaDeo in reply to Bunnie1

Bunnie1, please double check with your onc what AussieNeil said. It's no LIVE vaccines for us. Virtually every cancer site I've looked at whether government, university, or research center states it's only the LIVE ones we shouldn't get, and to GET others, especially yearly influenza. Every onc (I've seen a good half dozen over the past decade) says "get vaccinated".

Bunnie1 profile image
Bunnie1 in reply to SofiaDeo

Ok

I have been on ibrutinib for a year, and the overwhelming advice is to have the vaccine. Also watching the responses on this site it seems like everyone who had had the jab has been doing fine. I look forward to getting mine within the next two weeks.

Ive been on Ibrutinib for 6 months now. Also on Venetoclax and Obinituzumab. It is a clinical trial. My hematologist strongly recommended I have the vaccine. I just got my second dose of Pfizer this week. What my doctor said was that it might not be as effective as for "normal" people, but that it still would be effective, so why not get it. And I did.

I have viewed many webinars with CLL specialists thru the Patient power site...and they seem to all say take the vaccine but due to a compromised immune, we may not get the full benefit but some is better than none. Then again, they don't know. So many unknowns out there.

Bunnie1 profile image
Bunnie1 in reply to Gisygirl

A rushed vaccine that may or may not alter your DNA. I think I’m going to wait a little bit.

SofiaDeo profile image
SofiaDeo in reply to Bunnie1

The mRNA Covid vaccines, and the ones for pneumonia & herpes zoster, or influenza, are not DNA altering. They just try to stimulate an antibody response, and possibly a T-cell response. Here's a Forbes article that explains it in a non-technical way:

forbes.com/sites/victoriafo...

It's the "anti-cancer" and other types of vaccines specifically designed to use DNA, that may do so, depending how that DNA based vaccine is designed (where & how it affects cancer). This article is a little techy:

jeccr.biomedcentral.com/art...

This area is all pretty new & confusing to non-scientists. Journalists will take a sentence (or many) out of context, and then try to write "sensational", attention-grabbing articles with snappy headlines. And as we've discussed here recently (2 articles I can think of in the past month alone), the Title of the article, if not the article itself, was incorrect/misleading. What AussieNeil has called "sloppy journalism".

K. Thanks

AnneHill profile image
AnneHill in reply to Bunnie1

We have to trust the scientists. They are saving our lives with treatments for cll. So many people have died with covid and we need everyone to have the vaccine. There isnt a cure and not having the vaccine is taking a big risk. We need to hope it will help us, Anne uķ

No, the opposite

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