Expert Access Second Opinion from CLL Society ... - CLL Support

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Expert Access Second Opinion from CLL Society - PRICELESS!

Palmetto
Palmetto

Husband and I were so fortunate this morning to have a consultation with our CLL expert Dr. Matthew Davids from Dana Farber in Boston. We will be forever grateful to the CLL Society! Thankfully he concurred with my opinion that no treatment is necessary at this time. I am especially happy that we decided to hold treatment until we had the second opinion and learned something about Gazyva and the covid vaccine. He seems to believe that if received less than 6 months after the last Gazyva treatment that the vaccine may not be as potent. This was valuable information. Thankfully last treatment was early September which means by April of 2021 a vaccine should be effective. Has anyone else heard this from their specialist? We could not have asked for a more thorough evaluation. Dr. Davids was completely familiar with all aspects of past medical history and indicated he had definitely spent time studying all pertinent information. So thankful too for this wonderful site because without it we would have never known about this valuable tool available to us.

25 Replies
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AussieNeil
AussieNeilAdministrator

Great to hear!

With respect to the timing of vaccinations with Gazyva (and other CD20 monoclonal antibodies, (MABs) such as Rituximab and Ofatumumab/Arzerra), on completion of a course with these drugs, there are typically no B-cells remaining in the blood and the CD20 MAB continues circulating in the blood, removing fresh B-cells until all the CD20 MAB is taken up. That can take 6 months or so. Until you have an adequate supply of healthy B-cells needed to respond to a vaccination and produce antibodies specific to the antigens contained in the vaccine, you obviously won't respond all that well to the vaccination, though some T-cell response can occur.

This is why it is best to have all your (non-live only) vaccinations up to date before you start treatment, healthunlocked.com/cllsuppo... preferably as soon as possible after diagnosis, as the CLL suppression of healthy B and T cells tends to worsen as the tumour burden grows.

Neil

newyork8
newyork8 in reply to AussieNeil

Suppression of B cells or reduction of effective B cells?

AussieNeil
AussieNeilAdministrator in reply to newyork8

All approved CLL treatments also reduce B-cell counts. Immunophenotype flow cytometry testing well into my trial only detected T-cells.

Neil

newyork8
newyork8 in reply to AussieNeil

Wonder if stopping treatment for some period, taking covid vaccine, and restarting makes sense. If good B cells can create antibodies during hiatus will starting treatment again prevent these newly created antibodies from being effective?

AussieNeil
AussieNeilAdministrator in reply to newyork8

Stopping treatment has its own risks, particularly with BTK inhibitors:

healthunlocked.com/cllsuppo...

You would need to stop treatment for longer than the time permitted for surgery - probably a month or so. That'a because you need to allow enough time for a recovery of healthy B-cells and then for a further couple more weeks for the SARS-CoV-2 specific B-cells to mature into plasma cells and memory B-cells.

B and T cell recovery from other treatments could well take longer.

The good news is that the resulting plasma cells should not be affected by resuming treatment, but then again, natural immunity from the coronavirus long term seems to be due to T, rather than B cell based immunity. We don't know whether that's different for any of the vaccines.

Neil

newyork8
newyork8 in reply to AussieNeil

Thanks for the reply!

In line with AussieNeil’s comment: I finished 6-rounds of BR late Jun2019.16 months later and my B-cell lymphocytes are still at ~zero

My vaccine thoughts proceed along similar lines — just had flu jab, but suspect it will benefit me very little if at all.. rejected a 2nd jab (the primary care computer said I was eligible for it..) but don’t know what it was..

[Maybe someone can guess? - had initial prevnar etc 1st half of 2017]

However, I doubt that 2nd immunisation was likely to benefit me either.

More important to avoid risk of respiratory infections a while longer.

The good news: once the new vaccine(s) are rolled out.. and that will take months.. there will be a genuine prospect of some herd immunity developing and reducing the risk to ourselves.. and failing that, there is the antibody product/treatment.

Glad you had a helpful 2nd opinion.

bkoffman
bkoffmanCLL CURE Hero

Thanks for the kind words. Dr. Davids is referencing that Gazyva and other similar anti-CD20 monoclonal antibodies suppress B cells for many months after the last infusion and since B cells are needed to make antibodies, vaccines's efficacy can be compromised. There still could be some benefit, as T cell immunity may be important in our immune response to SARS-CoV-2, but we have no data. Best to wait. We are hoping to research the CLL patient's immune response. A flow cytometry can tell if you have a recovery of B cells. BTW, my B cells were gone for > 1 yr post CAR-T for a similar reason, but are slowly returning, so I will be getting vaccinated.

Eagles1
Eagles1 in reply to bkoffman

My doctor told me I'll most likely have to start meds within a year. I'm at stage zero, but my bloodwork has been getting progressively worse. We're considering Gazyva and Venetoclax. If the Covid vaccine is available prior to starting treatment, should it be effective? Thank you!

Palmetto
Palmetto in reply to Eagles1

Good luck to you! According to what I’m reading here it sounds like as long as you get the vaccine before starting treatment it would be effective But I will let the real experts weigh in on this

HopeME
HopeME in reply to Eagles1

It is uncertain how effective the Covid vaccine will be for the immune compromised. We will simply have to wait and see. That being said, we know that vaccines generally work better early on in the natural history of CLL and prior to treatment so you will likely have a better chance of the vaccination providing protection.

Please don’t forget to get up to date on all of your other vaccinations before your first treatment begins.

Best

Mark

Eagles1
Eagles1 in reply to HopeME

Thanks Mark,

I got my flu and pneumonia shots two weeks ago. I also got the Shinrix vaccines two years ago so hopefully I'm all set. If there are any I missed please let me know.

HopeME
HopeME in reply to Eagles1

Check on hepatitis and tetanus. There is a pinned post on this site concerning vaccinations. I need to review it before my annual physical in January to make sure I’m not missing anything.

Thanks

Mark

Eagles1
Eagles1 in reply to HopeME

Good idea. We got our tetanus shots in March 2019 along with only one shot of Hep A. I have my annual physical with my family doc in December and I'll review it with him then. Thank you for your help!

bkoffman
bkoffmanCLL CURE Hero in reply to Eagles1

No data, but it makes sense the vaccine would work better before starting treatment, especially the obinutuzumab that will severely dampen your ability to make antibodies for months after you stop.

Eagles1
Eagles1 in reply to bkoffman

I’m getting a second opinion with Dr. Davids in February. I definitely prefer to defer treatment until after I receive the vaccine. My current oncologist thinks I’ll need treatment within a year, so hopefully I’ll get the vaccine way before then,

bkoffman
bkoffmanCLL CURE Hero in reply to Eagles1

Makes sense and timing should work out.

Palmetto
Palmetto in reply to bkoffman

Doctor Koffman This may sound silly but say you have gotten the vaccine and built up antibodies and then are treated with something like Gazyva which destroys B cells will it also possibly take away the immunity that the vaccine gives you? Or will hopefully there be enough T cells to maintain?

Thank you. Hopefully we'll know the efficacy for those of us who are immunocompromised within a short time period.

This was one of the more important things I took away from the consult as none of our other doctors seemed to be aware of this. I just had a cardiology consult last week and my husband is also his patient and he was hoping we could get it by year's end due to his status, now it seems that is not the case. Also his hematologist has never mentioned vaccines at all. So this is something we all need to know about and I hope more research into these vaccines will provide some of those answers as it seems most people if not all in the trials, had no preexisting conditions. Happy Thanksgiving all!

It's great to here about Dr. Davids. I have an appointment with him on February 4th. I scheduled it in October and took 4 months to see him.

HopeME
HopeME in reply to Eagles1

You will be happy with him. Not only is he smart but he is a nice person and he always has time for questions. And most importantly, I find him trustworthy. I consider myself fortunate to have him as my CLL doctor.

Eagles1
Eagles1 in reply to HopeME

Although I like my current doctor, he's not very forthcoming with information unless I ask specific questions.

Palmetto
Palmetto in reply to Eagles1

This will not be the case with Dr. Davids. He is very open to discussing and answering your questions!

We were truly impressed and afterwards made a contribution to the Cllsociety and also made it my charity on Amazon with gratitude

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