I am two months into Ibrutinib, which is improving my blood counts with almost no side effects. Yay! I did not start Ibrutinib until after I was "fully vaccinated." Because I have an opportunity to travel to Palermo next month (I live in the US), took an antibody test to see what kind of protection I have from the Pfizer vaccine. Sadly my test showed that I had formed no antibodies against SARS-CoV-2, so I am almost certain not to go.
My hematologist says there is currently no recommendation in cases like mine to have a booster shot. I was wondering about whether I should try a different vaccine, like J&J perhaps or Moderna. It doesn't seem to me like it could cause any problems. Either like the first one it fails to produce antibodies or unlike the first one it actually works.
Has anybody done this or know anyone who has? Thoughts on this?
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It’s a good question, one that I doubt has any clear answer though.
I am in the same boat just having learned I am negative for antibodies after the Pfizer vaccine. Since I am on acalabrutinib, my assumption is all my lymphocytes have been suppressed to some degree. It seems very unlikely if one vaccine did not work for me why another might.
That said, I doubt it’s been studied and that anyone can say for sure. If we are to accept all the vaccines are safe, your point is well taken - what’s the harm in trying?
Did you ask your doctor about trying a different vaccine? My guess is he would say the same as to the booster, he can’t recommend it because it’s never been tested. And I suspect he thinks there is little chance it would work.
I still think it’s a good question to ask and plan on asking my doctor, even though I doubt he will recommend it. I think in the long run, the best chance for those of us with Cll who do not respond to the vaccines will be long lasting, preventative monoclonal antibodies. There are some in development, I hope they work and get approval soon.
I have read much on this subject. The latest is that you might get a benefit from a booster. Not only that but B cell antibodies are not the only benefit from a vaccine. So go for it, cant hurt...:)That said, Institute a emergency Clonal Antibody Cocktail back up plan. COMBATCOVID a government website has a ton of info on what facility near you has a antibody infusion center.
They have a manned 24/7 phone number you can call....1-877-332-6585
My plan is if I get a hint of any cold or flu symptom? I get tested that same day. If a quick test location close by my home is closed. I hop in my car and drive to Wake Med North Raleigh. They will test me and upon positive results will infuse me while in Emergency that same day.
So contact Combat Covid, find a facility near you and get there fast if you have any symptoms.
We are preapproved for antibody cocktail treatment as we are on the list for high risk.
You dont need any permissions or referrals when you go directly to an emergency department at a hospital that carries clonal antibodies.
A slower way is getting a referral from your doctor and then wait for an appoinment at an infusion center...too slow and problematic for me. Emergency department is the fastest way!
Totally agree on the booster, in France a third dose is now recommended already in case CLL patients do not respond to the first 2 shots, just for information. I hope it helps the discussion, and good luck to you and to us all...I am awaiting the antibody test results (after the 2nd dose so far) today and keep you posted....
I asked my CLL doc that very question and also checked with my GP doc, both said it can’t hurt to try. No data I could find about that concept and if it gives you a shot (no pun intended) of gaining antibodies.
Then there may be booster shots down the road (thus fall?) and those are being touted to help and fight the variants.
Sorry to hear your score but assume you’ve read info that antibodies test does not predict level of prevention. The LLS study states they (and CDC plus LabCorp) are researching on that study data to hopefully find out more about it and get back to participants about level of protection.
That was last word I heard directly today from LLS as matter of fact. TBD.
So there is still hope for everyone as Yogi Berra once said “it ain’t over till it’s over!”
Hi bkoffman- To me expecting a different result from a different Covid vaccine doesn’t make sense, so would appreciate a bit more insight on this. Thanks 🌸
There are different sorts of vaccines for pneumonia (pneumovax and prevnar). They work in very different ways and as Cllers we are advised to have both - first prevnar then pneumovax at least 8 weeks later. The prevnar is usually more effective for us than the pneumovax, but both are worth having to give us a better chance of getting some immunity.
It makes sense that having different Covid vaccines might help us too... Still so much to learn about these things though.
I have covid and both AZ Jabs.... no antibodies as I expected. My consultant says I never will generate antibodies. My consultant believes my childhood vaccination protection has also gone and re-vaccination for those wouldn't work either. I was diagnosed 30 weeks ago and went straight to Obinutuzumab and Ibrutinib, I am 57. I am resigned to not attending concerts , fliying, sports events or even family weddings again.
Dear friend, as we are all unique, when I read your reply I wanted to encourage you that I’ve had this disease for 13 years, had FCR and B+R and have been on Ibrutinib for 6.5 years. I go to group functions, flew regularly for work, went to mass sporting events and in all this time I’ve had the flu twice and two chest infections….I believe I’d get them without CLL! Data says my immune system is compromised, yet I live an overwhelmingly normal life. I hope you can too…but do what you feel is right for you. I wish you the best 🙏🏻
Steve, did you not test positive for covid and have a mild case? That would seem to me the best proof there is that you have a functional immune system and/or that you got some protective benefit from the vaccine.
I have been on ibrutinib (now aclabrutinib) for three years now and have been on several international flights and have attended countless football games, activities I plan on resuming.
We all have to find our own comfort level and get advice from our doctors, but we have lots of members on here in various stages of treatment that still go out to events. It sounds like you are doing well on your treatment and did well with covid. I am very encouraged by that. Many people assume they fact they teste negative for covid antibodies after the vaccine means they are doomed to die from covid if they do not isolate forever.
At your stage of treatment I would not even consider international travel a month from now.
Call me a wimp, but no way would I rely on getting a positive antibody test result from a third shot.
I would consider going IF:
1. There was a compelling reason AND
2. I had received protective monoclonal antibodies e.g. Regeneron, Astrazeneca that had come through clinical trials and demonstrated efficacy against circulating variants OR
3. In the destination country there were NO new cases and at least two thirds of the population had been vaccinated.
The situation in Sicily is not as bad as in the more populated northern regions of Italy, but the pandemic still has legs there google.com/search?q=covid+r...
My specialist said that they expect there will be some "vaccine junkies" who get all three vaccinations (Pfizer, Moderna, J&J) just because they can. He didn't seem overly concerned about this so I suppose it can't hurt. Whether it helps, he doubts.
I think this is excellent if long presentation from UCSF. I thought you might find it worth the time if you are interested in the present state of COVID-19 and how it affects those of us with impaired immunity. Full of gems and that current recognition that we are just at the beginning of our understanding of the pandemic in the immunocompromised.
The first 26 minutes is about the recent trends in COVID epidemiology. Lots of encouraging data, especially in California and the Bay area, but most everywhere else too except India. Interesting brief talk about vaccinating children too.
26:45 in is where to find the talks on the IS (immunosuppressed) including CLL and patients on drugs for lupus and other conditions. Case studies at the end are also informative
It’s over an hour, but very timely and well moderated. The science is mostly accessible for the non-medical.
My takeaways:
* Things are getting better in the USA due to vaccinations and vaccine hesitancy may be waning.
* Vaccines may be somewhat protective in preventing severe disease even in those with impaired immunity.
* Forming antibodies after vaccination is important, but how protective it is in unclear. Certainly not 100%. Testing post vaccine is an option worth serious consideration in the immunocompromised. I personally recommend doing it.
* Even low doses of some med (i.e. 10 mg of prednisone) impair immune response and increase the severity of a COVID infection.
* T cells function is important and is likely linked to B cell activity, in other words antibody levels (see attached for a rather technical paper).
* Monoclonal antibodies such as REGEN-COV (what Trump received) and others in development have a critical role to play in COVID prevention and management in IS patients that is not being fully realized under the present EUA (1:10:52 in the last case study).
* The research on the immunocompromised is in some ways similar to where the research in the general community about SARS-CoV-2 was a year ago. Much left to do.
We need to keep working to find the answers and improve the options for IS patients. CLL Society is working on its own and partnering with others to help getting us closer to those answers and our safety.
Personally I more hopeful now than I have ever been since the start of the pandemic.
Stay strong. We are all in this together.
Brian
Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP and Chief Medical Officer
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