CLL, Imbruvica and the vaccine

[Sharipisc]

I'm looking for someone who has CLL and is on Imbruvica. I am concerned about the effect of the vaccine on my T-cells on the Imbruvica. I am scared to death of the vaccine and don't want to get tested weekly with those chemicals up my nose. I would like to hear from people who have had the vaccine and are on Imbruvica. THank you

[Davidcara]

The vaccine is no problem. In fact, probably does not even work when you are on ibrutinib. I tested negative for antibodies, after two doses of Pfizer. With that being said, I cannot wait to get a third dose. Anything, even minuscule may help fight the virus. Virus is bad, get the safe vaccine.

[lsutigers2018 in reply to Davidcara]

I had no issues with vaccines. I will get third phizer next week. I have other issues on imbruvica but still grateful for it.

[AussieNeil Administrator]

I'm not sure why you are concerned about your T cell function while on Ibrutinib, because there are several studies such as these, which show T cell improvements:

Ibrutinib restores immune cell numbers and function in first-line and relapsed/refractory chronic lymphocytic leukemia

sciencedirect.com/science/a...

Long-Term Ibrutinib Therapy Reverses CD8+ T Cell Exhaustion in B Cell Chronic Lymphocytic Leukaemia

frontiersin.org/articles/10...

Personally, early this year, I completed a course of acalabrutinib, (a second generation version of ibrutinib), venetoclax and obinutuzumab. Subsequent flow cytometry tests have shown that my now normal lymphocyte count is just T and NK cells, with no B cells.

I've had my first AZ COVID-19 shot and am halfway through the waiting period for my second shot. With negligible B cells from my treatment, I'll be relying on those T cells responding to the vaccinations to protect me.

Neil

[Sharipisc in reply to AussieNeil]

I actually was concerned for my B cells.

[AussieNeil Administrator in reply to Sharipisc]

All approved CLL treatments reduce healthy B cells, but when you consider that CLL inhibits our immune system, including suppressing our B plasma cells, which produce antibodies, treatment can potentially improve our immunity. See: cllsociety.org/2019/10/ash-...

What specific concerns do you have about the vaccines?

Neil

[Sharipisc in reply to AussieNeil]

Long term effects of the vaccine especially since many things I’ve read state that our immunity is not greatly affected by the vaccine because if the CLL. Patients with and without treatment. Why take it if it’s not effective?

[AussieNeil Administrator in reply to Sharipisc]

Keep an eye on the outcomes of the specific studies on how those with CLL respond and whether any long term effects are worse than the likely outcome of a COVID-19 infection. We know that some of us do produce reasonable levels of antibodies and are now beginning to learn the correlation between antibody levels and protection provided. Soon, we'll have data on T cell responses, plus a better idea of our mortality and long term COVID risks if unvaccinated. From what I've read, vaccinations reduce the severity of COVID infections and reduce the risk of long term complications too.

Neil

[Sharipisc in reply to AussieNeil]

T cells too but both. Thanks for the links.

[Joel1959 in reply to AussieNeil]

Neil, btw, I mistook what you were saying on TCell improvements. I thought your contention was that the vaccine increased them, not Ibrutinib. An interesting article you linked, thanks. Additionally, the article would bolster the good news given McCullough’s belief that our natural Tcells are much more important and meaningful than antibodies in our overall immunity (they give instructions for antibody production). They have developed a new, supposedly accurate T cell test for past Covid infection, but I wonder about it’s accuracy on a CLL patient with our effected different T cell counts. You can read about it at: t-detect.com. My wife tested positive with that test, she took because we were pretty sure she had Covid back in Sept, but we didn’t do a garbage PCR test. I had slight symptoms at the same time for a couple days, so I thought I may have had it too (I literally never get the flu), but I tested negative on the T cell test. We waited a little too long to take the test (1year), they advertise it accurate up to nine months from symptoms, but at least got some comfort on her immunity, resultant lower loads, and reduced transmission. Lastly, please take no offense in my views on this vaccine. I totally support your right to take it, and understand your decision given your views on its safety and your potential risks with Covid. If I had your confidence on the safety we would probably not have even had our back and forth. My mother, 83 and COPD full time oxygen made the decision to take one, and given her lungs, I don’t fault her either. Two of my kids chose to take it, two didn’t. My two sisters did, my brother with COPD and I didn’t. House divided. None of us have had any issues so far, thank God. I know you have had a long road, so best wishes.

[WinJ3]

I am on Imbruvica and had bought vaccines without any problems. You probably should be more scared about Covid than a vaccine that's proven to be safe. I say without hesitation; Take the vaccines and any boosters that might become available. Continue masking and using safe protocols.

Covid can kill you 😕

Win

[AnneHill in reply to WinJ3]

That is great advice, Anne uk

[cajunjeff]

I was on ibrutinib and recently switched to acalabrutinib. I had two Pfizer shots in March. I joined the leukemia society study and tested negative for antibodies. I have recently taken JandJ vaccine and am waiting results of new antibody testing I expect will be negative again.

I would take a fourth vaccine if offered in a heartbeat. I have Cll and covid might well be fatal for me. My body had now seen the covid spike three times with my three vaccine shots. I believe it probable I have some T cell protection I lacked before and that covid is way more survivable for me after my vaccinations.

Almost 99% of covid deaths are among unvaccinated people. I personally and a thousand times more afraid of covid than some rare vaccine reaction. Who are flooding our hospitals? Covid patients or vaccine reaction patients?

[Joel1959 in reply to cajunjeff]

Jeff, you might want to look at Israel recently, a heavily vaxxed country that belies the 99% of deaths are unvaxxed statistic you claimed, as well as questioning how we report deaths in the first place (any medical issues occuring in the first 14 days after the jab are rorted as issues in an unvaxxed person). Think about how that policy would skew the results if they really are causing problems.

townhall.com/columnists/way...

[cajunjeff in reply to Joel1959]

Joel, you have linked me to an article by Wayne Root, a known whacko conspiracy theorist. I choose not to enter a political debate with you on vaccines.

[Joel1959 in reply to cajunjeff]

When you shoot the messenger, you inevitably miss the message. It's cool though, best of luck to you man.

[AnneHill]

You mention the tests for covid. I have to be tested before I can visit my mum in a carehome. You dont put chemicals into your body. You use a cotton bud on a longer stick. First you wipe your throat by your tonsils and then put high into your nostrils. Then you put the testing stick into the chemicals and wait for the test to be developed.If the test is negative we can make sure we dont pass the virus on and it works both ways as others can test before you meet.

My consultant says the immune system is complex and cll patients should have vaccines such as covid. Also pneumonia and flu.

I have had my jabs and will have a booster.

I have had cll for 20 years and I am really grateful to be treated. It has saved my life. The scientists have increased our life expectancy.

Without being unkind I realise that those who have cll and have treatments such as imbruvica should not be concerned about chemicals in our bodies. Ten years ago I had chemo. The addition of Rituximab was a game changer. Now we can pop a pill.

My poor dad had blood transfusions until they didnt work.

If the jab wont work we will have tried but without the jab covid is terrible. If you dont die you could be left with serious damage to your organs.

The number of deaths in the uk is around 90 a day. Many unvaccinated. I will wear my mask, social distance and wash and gel my hands. Despite around 6000 cases a day there are less deaths. It is reducing the symptoms. We have to hope it will work.

Please take care, Anne uk

[RZ8983DV in reply to AnneHill]

In the US if you self test you only put the cotton bud up your nostrils and not down your throat. I have been self testing practically every week after being in 'risky' situations , in enclosed spaces with other people. Still wear masks and do not take public transport

[AnneHill in reply to RZ8983DV]

We are in difficult situation. We didnt visit my 95 year old mother in law last year because of the risk. There were visitors to her flat including a hairdresser who wasnt wearing a mask. We had lockdown and she was breaking the law. She would have been visiting lots of people. My mother in law spent 10 weeks in hospital. I realise we were justified in staying away. Recently 4 members of my family had covid. The home test turned positive immediately. The adults were vaccinated and within a few days they recovered. The 12 year olds recovered but needed to stay in bed.

There are cll sufferers who recover but are very ill. Others like myself who have been diagnosed for a long time dont survive.

I hope you make the right decision. Anne uk

[RZ8983DV in reply to AnneHill]

Sorry to hear about the difficulties with your mother-law. I have had CLL for 13 years, but at a low level and have never needed treatment. I'm worried about having workmen in the house to repair a leaking bath tap even though I wore a mask when they were around

[PaulaS Volunteer]

Hi Sharipisc,

I am on Imbruvica. I've had 2 doses of the Astra Zeneca vaccine. I have to admit that the second jab gave me flu-type symptoms - high fevers and aching body for several days. But then I got better.

I haven't had any blood tests since then so don't know what affect the vaccine might have had on my B or T cells, or whether I produced any antibodies. I realise that being on Ibrutinib, I'm less likely to get good antibody responses than other people, but CLL is very variable and people's responses vary greatly.

I'm still taking the same precautions as I did before I was vaccinated, but am hoping I've now got a bit more protection than before. A booster jab might give me a bit more, so I'm happy to have that too.

You say you "don't want to get tested weekly with those chemicals up my nose". I believe that the packaging for some test kits say "sterilised in ethylene oxide", but this is the standard method for sterilising a lot of medical equipment. By the time the kit is packed, there is hardly any ethylene oxide left on it. These articles say more.

bbc.co.uk/news/56680399

reuters.com/article/factche...

I hope you'll soon feel happier about getting the vaccine. My haematologist recommended that I get it, and I genuinely believe that the possible benefits outweigh any slight risks.

Best wishes,

Paula

[Sharipisc]

Thank you for your encouraging post!!

[Youngen]

I am on imbruvica and had 3 doses of Pfizer without any significant side effects and my bloods remained steady. While we may not develop antibodies while on a BtK, I strongly believe that it does help our body fight off the virus and minimize complications should we get COVID

[Jacksc06]

Hi. I have had two AZ vaccines and tested negative for antibodies on the Birmingham university study. That said i would accept a third dose in a heartbeat. We need to try every avenue to try to protect ourselves.

[hhk50]

I would venture a guess that Imbruvica is the predominant medication taken by the folks on this forum and that all of us have been vaccinated. We're not worried about our T-cells and neither should you.

[Joel1959 in reply to hhk50]

Right on the first count, wrong on the second for me.