covid vaccine: hi all its been a while since... - CLL Support

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covid vaccine

kel555 profile image
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hi all its been a while since last post iam on my 5 fcr this Tuesday and i can tell you this as been the hardest task i have ever done the constant worry of covid 19 as my blood counts drop after every cycle, round 3 put me in hospital with sepsis which i recovered i had a bad cough for 2 weeks before the cycle 3 and loss of smell and taste i had a test done which all come back as negative while i was in the Christie hospital ,i went to see my doctor on Friday for a review before cycle 5 and i asked him about the covid vaccine he told me i should take it when offerd this month or next,iam confused if iam on fcr then would all my b cells and everything else gone and would there be any point of me taken it ,,any thoughts on this ,,kell

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kel555
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GMa27 profile image
GMa27

Odd you had cough lost senses and still negative. I don't trust the tests. My friend had procedure coming up so forced to take the test and was positive. He felt fine. Rushed to hospital since he was on dialysis- family members tested- crazy few days for them. He was tested the next day in hospital- and was negative. He never had the virus. Caused such a panic. I hope yours was truly negative but I would be suspicious.

I had 3 rounds of FCR and in remission 28 months. I am feeling great. Hope you do as well as I did. 💕

kel555 profile image
kel555 in reply to GMa27

Thank-you for that i know its very strange makes your head go all over the place ,well iam unmutated rest of the markers are all good 2 more rounds to go but i dont know how long remission i will get just wondering if any unmutated cll people on here have had long remissions longer than 3 yrs who are unmutated,,,,kel

cajunjeff profile image
cajunjeff

No one knows how effective covid vaccines will be for us. It probably varies from person to person and from one vaccine to another.

Your B cells can deplete during treatment, but that doesn’t mean you have no B cells. Your marrow cranks new ones out all day. As of now the covid vaccine appears safe for us. You might have enough functional B cells to get an immune response that gives full protection or one that gives partial protection.

The consensus of Cll doctors I have seen comment on covid vaccines is that we should take non live versions. The only downside seems to be some mild side effects that don’t last very long. The vaccine might not work for you. I think your doctor believes the chance the vaccine will work is a benefit worth the risk of potential vaccine side effects.

kel555 profile image
kel555 in reply to cajunjeff

thankyou

HopeME profile image
HopeME in reply to kel555

The question that you might ask your doctor is after I take this two series vaccine if my response is low, because I am currently receiving treatment, can I take the series again in the future after I’m out of treatment and my B cells have recovered? I think the answer is yes but I’m not certain.

Good luck with your treatment. I know first hand how difficult receiving chemo is both physically and emotionally.

Best

Mark

AussieNeil profile image
AussieNeilAdministrator in reply to kel555

The Pfizer/BioNTech vaccine uses your muscle cells to make copies of the coronavirus spike protein. Even if you get little in the way of a new B-cell response, you may get some T-cell response. It is also possible that you have some memory B and T cells as well as some plasma cells from previous coronavirus infections (e.g. from coronavirus colds), which might also respond to a COVID-19 infection or vaccination. If the vaccine stimulates those, it will possibly giving you some additional protection. As Cajunjeff said in his last sentence, your doctor may consider that the possible benefit likely outweighs the slight risk.Peggy4 , I hope this answers your question in your Update! post.

Neil

Peggy4 profile image
Peggy4 in reply to AussieNeil

Yes. Thank you Neil. I hoped you might be able to tell us and as usual you came up trumps 😀

Fran57 profile image
Fran57 in reply to AussieNeil

Great explanation...as always, Neil.Thank you.

Stay safe, Fran 😉

Jonquiljo profile image
Jonquiljo in reply to cajunjeff

I think we will all have varied responses to the Pfizer vaccine — that is — if we can ever get it. The same is probably true of Moderna’s vaccine. When CLL Drs talk about not taking “live” vaccines — it really makes me wonder if they have even paid attention to what the vaccines are. Only a few of the150-odd candidates are live, and none of the live vaccines are even close to release.

The AstraZeneca vaccine is NOT live. It is a chimp adeno vector that cannot replicate in humans. But ... I wouldn’t take it if possible because the company really goofed up on the trial data. They got some doses wrong, etc. That is kind of a mess. Yes it will give at least 70% protection, but 70% is not good for people like us. The stakes are too high. We need a 90+% vaccine.

cajunjeff profile image
cajunjeff in reply to Jonquiljo

Vector vaccines should be safe for us, I have never said anything different. We just can’t take a traditional live vaccine, traditional meaning the vaccine is a weakened version of the virus it seeks to prevent.

I think it is reasonable to assume we have a better chance with a 95% effective vaccine vs a 70% effective vaccine, but no one knows for sure. Vector vaccines have a different mechanism of action than rna vaccines like the ones by Pfizer and Moderna. The Oxford vaccine mechanism of action might work better for us. Or it might even be the vaccine that works for you won’t work for me.

It’s even possible we have vaccine cocktails where we take more than one.

Given that Pfizer and Moderna will be the first two approved in the US and that immunocompromised people over 65 should have high priority after health care workers and nursing homes, I expect to maybe get one of the two rna vaccines in January or February.

Big_Dee profile image
Big_Dee in reply to Jonquiljo

Hello Jonquiljo

It is my understanding that the AstraZeneca vaccine is a live virus, but as you say not transferable to humans as an animal vector. I how ever will pass on AstraZeneca as CV-19 started from animals? With other option available, I will wait for Pfizer or Moderna. This is just me, everyone stay save.

Jonquiljo profile image
Jonquiljo in reply to Big_Dee

I would pass on the AstraZeneca because their data is sloppy. The used the wrong dosing in trials for a while, fixed it, now have curious data that is unclear why it came out that way. Just bad science. The best they can claim is 70% protection- which is not very good.

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