Covid Vaccine for Immunocompromised - CLL Support

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Covid Vaccine for Immunocompromised

YelvertonDevon profile image
19 Replies

Just heard from a friend in England who’s Mother 93 has liver cancer, has had her first Covid vaccination and her second due first week in January 2021.

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YelvertonDevon profile image
YelvertonDevon
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19 Replies
lankisterguy profile image
lankisterguyVolunteer

Since there is only one vaccine distributed so far in the UK- that certainly is the Pfizer-Biontech vaccine. Here is a link to the pfizer.com/news/press-relea...

SNIP: Immunocompromised persons, including individuals receiving immunosuppressant therapy, may have a diminished immune response to the Pfizer BioNTech COVID-19 Vaccine

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Pfizer statements cdc.gov/vaccines/covid-19/i...

and a SNIP Immunocompromised persons

Persons with HIV infection or other immunocompromising conditions, or who take immunosuppressive medications or therapies might be at increased risk for severe COVID-19. Data are not currently available to establish vaccine safety and efficacy in these groups. Persons with stable HIV infection were included in mRNA COVID-19 vaccine clinical trials, though data remain limited. Immunocompromised individuals may still receive COVID-19 vaccination if they have no contraindications to vaccination. However, they should be counseled about the unknown vaccine safety profile and effectiveness in immunocompromised populations, as well as the potential for reduced immune responses and the need to continue to follow all current guidance to protect themselves against COVID-19

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So as has been repeated numerous times- There is no prohibition to CLL patients getting the vaccine, but there is no data to show it will be effective in generating antibodies for us.

See this discussion from 23 days ago: healthunlocked.com/cllsuppo...

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I plan to get the vaccine as soon as I can, but will also get tested for antibodies 4-8 weeks after the 2nd dose to see if it was effective for me. And I will continue to assume I am susceptible until I have proof that it worked for me.

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Len

HopeME profile image
HopeME in reply to lankisterguy

Hi Len

Do you have any idea how many CLL patients need to be tested for antibodies, after being vaccinated, to get a sense of how effective the vaccination is for our community?

Best

Mark

gemit2000 profile image
gemit2000 in reply to lankisterguy

Len, do you know if there's been any guidance given as to which vaccine to get if between Pfizer and Moderna for the immunocompromised? I met with my hematologist Thurs and asked and he said no. But then I read that Moderna has an adjuvant and Pfizer does not, and this just after reading a Patient Power transcript (12/15/20), which, leads me to believe CLL patients should aim for the Moderna vaccine.

This is an excerpt from that transcript - "Experts Share Advice for CLL Patients During Flu Season and COVID-19" - with Dr. Farrukh of Harold Simmons, UT who brought up the topic of creating vaccines to get a better immune response:

"... there are certain adjuvants, which.... can make the vaccines more immunogenic so the body has a better response...... For the most part, pretty much every single vaccine that is being developed for COVID, for the most part, they have an adjuvant".

But the next thing I check what 'the most part' means or if there are any without an adjuvant and the first one I check, Pfizer, does not. But then to complicate matters I infer Pfizer could be good in this regard after reading, "(Pfizer's) lipid nanoparticle (LNP)-formulated mRNA vaccine technology allows the delivery of precise genetic information together with an adjuvant effect to antigen-presenting cells."

So maybe that 'adjuvant effect' makes it just as effective for the immunocompromised. All I ever hear about the difference between the two vaccines is that Moderna's storage doesn't require as as deep a freeze as Pfizer's. But have you heard anything about one theoretically giving a greater immune response than the other?.... If not, maybe I should post the question.

Thanks, Gene (who's been helped a number of times by lankister guy)

bkoffman profile image
bkoffmanCLL CURE Hero in reply to lankisterguy

Even if we form antibodies, that does not 100% mean that we are protected and we sure don't know the durability of the protection. That said, I am very eager to get vaccinated.

YelvertonDevon profile image
YelvertonDevon

I wonder if CLL people will have because of its many variants, have a different and varied antibodies response to the vaccination?

SofiaDeo profile image
SofiaDeo in reply to YelvertonDevon

Most likely, I think. One might say that even non CLL patients will have different & varied antibody responses, similar to other vaccines. It simply depends on to what extent & how ones' immune systems are compromised, plus factors relating to overall health, other disease states, stress, nutrition...and who knows what else might affect antibody response to this particular vaccine. IMO there is no easy way to do a study to determine if there's any correlation between any particular CLL variant and antibody response, given all the variables. Perhaps a retrospective analysis might shed some light on this question, but I don't think we have the time or resources to start anything now. It's an interesting question & I think would certainly be helpful in determining risk and treatment decisions if there WAS an answer.

lankisterguy profile image
lankisterguyVolunteer in reply to YelvertonDevon

If all CLL patients have the same response it will be the only time that CLL is consistent and predictable, but I would take heavy odds against it.

SofiaDeo profile image
SofiaDeo in reply to lankisterguy

😂😂😂😂

YelvertonDevon profile image
YelvertonDevon

Interestingly I note that the UK Government has said no vaccine to breastfeeding Mothers. Knowing Mothers generate antibodies and remembering HIV when the US Agency I worked for said would not support HIV positive mothers breastfeeding but the organisation I volunteered at said to support all HIV Mothers that want to breastfeed.

When we all come out of this on the other side there will be multiple studies and research. Also a lot of blame games.

SofiaDeo profile image
SofiaDeo in reply to YelvertonDevon

I think its Standard Operating Procedure to say "no" new anything to breastfeeding mothers because we don't know what it will do to the infants if it gets into breast milk. Same for US Agencies not recommending breastfeeding when Mom has an infectious disease unless/until it is determined that it doesn't get into breast milk. And even if shown Not to, in the US, maybe recommendation is still No. The US is so litigious, we have to have warnings on liquor bottles that "alcohol may harm the fetus" because someone sued, claiming "they were never warned it would harm the baby". I mean, people sue for fast food coffee being too hot when someone gets burned spilling it on themselves in a moving car, it's ridiculous. I am not making this up, as Dave Barry would say.

YelvertonDevon profile image
YelvertonDevon in reply to SofiaDeo

I think there’s a little conflict in US I’ve read yes and I’ve read no. 😂 does it cross into breastmilk? And I remember very litigious. When we arrived a man in restaurant car park tripped over a migrating resting goose and sued hotel. That was our baseline!

HopeME profile image
HopeME in reply to YelvertonDevon

Please refrain from these types of comments.

Big_Dee profile image
Big_Dee in reply to SofiaDeo

Hello SofiaDeo

The one label I liked was "Do not iron shirt while wearing shirt". The American dream is to sue for million dollars and split it with lawyer. :)

HopeME profile image
HopeME in reply to Big_Dee

Please refrain from these types of comments.

Big_Dee profile image
Big_Dee in reply to HopeME

Hello HopeMe

If you will indulge me through the Christmas season, I thought I was on the Healthunlocked "Postive Well Being In Self-Isolation" website.

in reply to HopeME

Hi HopeME,

Some genuine feedback here...when policing other people’s comments it might be useful to identify what ‘type of comments’ these are and why they are unacceptable. It will help posters and readers understand what the limits of posting are.

👍

HopeME profile image
HopeME in reply to SofiaDeo

Let’s keep it to CLL and away from comments regarding non related issues. This is going no where good quickly.

YelvertonDevon profile image
YelvertonDevon in reply to HopeME

My point was connected to CLL.

Breastfeeding - Mother - CLL - vaccine no vaccine - countries cutting edge vaccines, medicine, surgery - litigious. Sometimes one needs to stop Doomscrolling (NZ 2020 Word of the Year) and smile because we are all in it together. Enjoy The Holidays and keep safe.

kathymac52 profile image
kathymac52 in reply to HopeME

I agree with you.....during this season especially, it would be nice to encourage peace and understanding and not division.

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