Re-inoculate?

[mouseandchair]

Hello you wonderful and oh-so-knowledgeable folks!

This is a good-news story. After 11 months on a zanu-obin-venetoclax trial I've been in remission for 3 years. AND a lymphocyte subset test suggests that my B cells are coming back! Now here's my question: while I was on treatment and in the past 3 remission years I've had inoculations against pneumonia and shingles. Now that I have a chance of mounting an immune response, should I repeat these inoculations? Is there any downside to doing that?

Thanks to all of you!

[AussieNeil Partner Administrator]

That's a good question that no doubt others finishing treatment are also wondering about. I suspect you haven't received any replies, because you posted unlocked healthunlocked.com/cllsuppo...

Certainly, now that you have B cells returning, you have a much higher chance of gaining some immunoglobulin protection from boosters, though you probably did get some cellular (T cell) protection.

Vaccinations aren't risk free, but the risks are way less than that from the actual infections. Pneumonia of course can be deadly and shingles can leave you with permanent damage to your eyes, hearing or never ending postherpetic neuralgia or even worse neuropathy. Talk to your GP/PCP about having boosters.

Neil

[MovingForward4423]

I have just been through a bunch of antibody tests after taking a bunch of vaccinations, including Shingles. I was positive to everything apart from Tetnas which was a little low. I’m have a booster soon. So yes, get yourself vaccinated while your immune system is in good shape.

[SeymourB]

mouseandchair -

I'm on a similar firstline triple trial therapy (pirtobrutinib, obinutuzumab, and venetoclax), and my last lymphocyte subset at the end of the trial in February did not show any CD19 cells at all. They didn't do lymphocyte subset on my first quarterly followup 3 months later. I complained about that, and hope to get a lymphocute subset at my next followup at the end of August.

My IgG, IgA, and IgM dropped further on the followup, and ClonoSEQ Total Unique Sequences in blood were further down compared to the end of the trial 3 months previous.

So my plan is to not even attempt a restricted vaccine until Ig's and Total Unique Sequences rebound some. I define restricted vaccines as those that bureaucratic providers refuse to do twice. Things like COVID and flu are easy to get twice. But I fear that pneumococcal pneumonia and shingles take some effort to find a provider who will re-innoculate, even with a prescription. It used to be that my primary care would do all vaccines, and now they no longer do any. My hematologist also does none.

Ideally, I'll try to get titers through my allergist/immunologist. But I'm not sure if she does titers for the newest pneumococcal pneumonia vaccines (PCV20/Prevnar20, Capaxive). I did poorly on titers for Pneumovax23 several years before treatment, and also did not mount significant response to multiple COVID mRNA shots prior to treatment.

It irks me that so little attention is paid to immune recovery testing and vaccine response after CD20 therapy. The issue has been well defined, I think. The next thing we need is a study to help define testing and vaccination protocols instead of simply hoping for a T-cell response or some minimal, seroconversion or binary seropositivity test that does not correlate with any sort of real protection.

=seymour=

[mouseandchair in reply to SeymourB]

Hi Seymour! Thanks for this! You are way more advanced in immune-speak than I am. My doc at MSKCC waited until 3 YEARS out to give me the subset test. My guess is he figured they’d probably get nothing before now. This does seem to be a research black hole. And yes: it is irritating! Best to you! Mouse

[SeymourB in reply to mouseandchair]

Mouseandchair -

Don't let the lingo fool you! I'm an amateur carefully dodging Dunning-Kruger. Most of the time.

Did you have ClonoSEQ testing?

=seymour=

[mouseandchair in reply to SeymourB]

Hi Seymour! I had to look up BOTH ClonoSEQ and "A little knowledge is a dangerous thing." My uMRD was established via Bone Marrow Biopsy. Have not had one in 2 years, thank goodness. Though that IS a good opportunity to take drugs and cabs.

mouse

[SeymourB in reply to mouseandchair]

mouseandchair -

ClonoSEQ can use both bone marrow and blood. But so can the older FC (flow cytometry) MRD. FC MRD can detect as few as 1 cell in 10,000 WBCs.

Do you happen to know which trial you were on? Was it the BOVEN trial?

What are your CLL markers?

I'm hoping to chart my future based on others who have been in triple trials.

=seymour=

[mouseandchair in reply to SeymourB]

Hi Seymour! I'm pretty sure it's BOVEN. Also I don't know my markers. Nobody volunteered to tell me. As of right now, they don't matter. I'm not a very informative correspondent.

mouse

[SeymourB in reply to mouseandchair]

mouseandchair -

That's ok, you can still be in the triple club. I'm just glad you're doing well.

=seymour=