Three vaccinations and breakthrough case - CLL Support

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Three vaccinations and breakthrough case

CCLandwell profile image
82 Replies

So I did what they said, two covid shots. When they approved the booster, I was in line the first weekend. Now after a non vaccinated came to work with covid, I tested positive. So far mild symptoms but the fear factor is there. Sadly I live in California with a woke policy if anything that helped Trump must be bad. There is nothing pro active offered to help reduce the chance of this getting worse.

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CCLandwell
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82 Replies
Smac29 profile image
Smac29

Hi, I’m sorry to hear that. Hopefully you have a very mild case. Can you call your oncologist and ask for a antibodies infusion?

Good luck!

CCLandwell profile image
CCLandwell in reply toSmac29

Thanks for you r reply. I juts signs on to new insurance my oncologist was in Nevada. No oncologists yet and the web page for the insurance is so poorly written.

gardening-girl profile image
gardening-girl in reply toCCLandwell

CCLandwell, please call your local health department to find out where you can access the monoclonals. The treatment should be without a cost to you. You don't have to have a local doctor.

Palmetto profile image
Palmetto in reply toCCLandwell

There is no charge for the monoclonal antibody treatment Regeneron all we had to do in Florida was make an appointment and show up. No doctor has to prescribe And you should take it within the first 72 hours after you test positive

Astro617 profile image
Astro617 in reply toPalmetto

In Florida the governor had his state surgeon general write a blanket prescription so anybody could get Regeneron anytime. It won't be like that in CA.

Davidcara profile image
Davidcara

What part of California do you live in. You could try calling an academic center for antibodies. Maybe UCLA Health, or UC Davis. Anywhere that is a large health center. There should be some sort of contact through your new health insurer.

annabelle63 profile image
annabelle63

So why do we have three shots if they don’t work? I am vaxed but not interested in booster. Still suffering from my second one. Who knows what’s in it ! Hope you don’t suffer with this snd remember Fear only makes it worse

Palmetto profile image
Palmetto in reply toannabelle63

Because if you do you get Covid you should either be asymptomatic or have mild symptoms and a high percentage would never have to be hospitalized or die. That is the reason for the vaccine.

HopeME profile image
HopeME in reply toannabelle63

Annabelle: It has hard to know what CCLandWell’s counter factual would have looked like but all CLL doctors recommend that CLL patients should keep up with recommended vaccinations, including a third Covid vaccination. While these vaccinations might not make us immune they lessen our risk of significant disease. Please note that CCLandWell notes that his/her disease symptoms are mild.

Best

Mark

CCLandwell profile image
CCLandwell in reply toannabelle63

Time will tell. Five months after my second vaccine I tested and showed antibodies for covid. I then one month later took the booster shot. My levels seem very high because I showed positive in a home test kit twice within 30 seconds, the results were supposed to take 15 minutes. I verified my positive results at a drive through test center, At this point of the 5 people I know attacked by this Virus (inappropriate comment edited by Admin). I seem to be doing better than the other 4. One in this effected circle is on life support. None of the others we’re vaccinated. I believe I’m in day 5 or 6th day of infection but my understanding is things can deteriorate quickly in the next couple of days. Time will tell

Davidcara profile image
Davidcara in reply toCCLandwell

I am surprised the forum’s administrators allow racism on the website.

Justasheet1 profile image
Justasheet1 in reply toDavidcara

I’m sure he meant to say “originated in China”. Give him a pass, he’ s not feeling well and no, the admin doesn’t allow racism.

Davidcara profile image
Davidcara in reply toJustasheet1

Thinking about that now, I’m sure him meant to say that too.

Justasheet1 profile image
Justasheet1 in reply toDavidcara

Or not… it seems that you poked the bear.

cajunjeff profile image
cajunjeff in reply toJustasheet1

Jeff I am sorry the original poster got covid and glad he is doing better.

But the reason this thread turned political is due to the original post which injected wokeness and Trump into a discussion about covid and cll.

I did not respond to the original post because of that. His comments likely don’t offend you because you share his politics, nothing wrong with that.

But to be fair, this thread was destined to turn into forum members bickering and it started with the original post, not those who responded.

I would day the same thing about a post expressing political opinions for ether side. It doesn’t belong on the board. We all have cll. It wasn’t caused by wokeness or Trump.

Justasheet1 profile image
Justasheet1 in reply tocajunjeff

Jeff #1,

I’m not sure why you jumped in.

“I did not respond to the original post because of that. His comments likely don’t offend you because you share his politics, nothing wrong with that.”

I agree with you that it was political and to some extent, do share the political views of the original poster.

Even still, I notified the moderators to it immediately.

I’m caught off guard here and certainly don’t want or need a lecture from you.

Perhaps do what I did and notify the moderators if you are offended by something or feel something is inappropriate.

Jeff #2

LeoPa profile image
LeoPa in reply toJustasheet1

Delta originated in India as a matter of fact. The original fairly harmless version of the virus came from China.

Qwerty77 profile image
Qwerty77 in reply toLeoPa

I’m not sure you can say the original was ‘harmless’.........the transmissibility has significantly increased with all these variants but the actual effects of the virus have only become (in comparison) only slightly more ‘deadly’

LeoPa profile image
LeoPa in reply toQwerty77

Yes that's what I meant. It was harmless compared to delta because it was not spreading much compared to delta. It was very easy to contain and to not get infected if one took proper precautions. The only problem was that few took them back then.

Justasheet1 profile image
Justasheet1 in reply toLeoPa

And the vaccines hadn’t been released yet too.

LeoPa profile image
LeoPa in reply toJustasheet1

Yes, plus Merkel and Ghebreyesus themselves plus nearly everyone else spread false messages about masks being useless in preventing contagion. Not to mention politicians who severely underestimated the threat. Mind blowing mistakes. Total lack of common sense.

Justasheet1 profile image
Justasheet1 in reply toLeoPa

Leo,

Are those two people from the World Health Organization ? Remember, they too said masks weren’t necessary early in the pandemic.

Sadly, we are both dinosaurs still discussing masks as the rest of society has moved on.

LeoPa profile image
LeoPa in reply toJustasheet1

Yes, Ghebreyesus is the boss of WHO and Merkel is Germany's former chancelor. Lots of people in our place have moved and are still moving on towards the cemetery as we speak :-( unfortunately because those who don't remember at least the recent history are bound to repeat all the mistakes. It feels like we are running into a tunnel with no light at the end at lightning speed. I'm a proud dinosaur :-)

newyork8 profile image
newyork8 in reply toLeoPa

Excuse me? How many people died in Wuhan from this "harmless" possibly lab created virus?

LeoPa profile image
LeoPa in reply tonewyork8

Anecdotal evidence. My brother spent 15 minutes in a room talking to a person sitting on the same sofa 1 m from each other with only surgical masks on. And he did not catch it. That sounds pretty harmless to me. Try to do that with delta. Anybody who took precautions seriously did not get infected.

CCLandwell profile image
CCLandwell in reply toLeoPa

Stop judging people, you clearly have no medical background, just a prejudice built on ignorance

LeoPa profile image
LeoPa in reply toCCLandwell

I'm not judging anyone but if someone feels judged that's none of my fault.

CCLandwell profile image
CCLandwell in reply toLeoPa

No version was harmless. The delta only transmits faster,

LeoPa profile image
LeoPa in reply toCCLandwell

And that is the biggest problem. And it not only transmits much faster. It kills more young people too. The local statistics show it very well. We got loads of 30ish 40ish unvaccinated people dying now.

CCLandwell profile image
CCLandwell in reply toLeoPa

I’m shocked they allow this misinformation on here

LeoPa profile image
LeoPa in reply toCCLandwell

Perhaps because it is not misinformation. Everybody informed knows that the original version was much less contagious. If you don't you did not do your homework. The current statistics show that delta is much more dangerous for younger folks too. Looks like you need some catching up to do.

CCLandwell profile image
CCLandwell in reply toLeoPa

Please post a new link to back such a claim

LeoPa profile image
LeoPa in reply toCCLandwell

Subscribers only, current situation in our perhaps worst hit hospital where people are dying like flies, 32% vaccination rate in the region. Use deepl.com to translate Slovakian to English.

dennikn.sk/2602614/pacienti...

Justasheet1 profile image
Justasheet1 in reply toLeoPa

Leo,

I’m not sure why you’re mentioning this to me. I know where the original strain snd variants originated from but thank you for your contribution to the conversation.

As to your statement that the “original fairy harmless version of the virus came from china”,

I’m glad that you cleared up your meaning. It’s amazing how the message can get distorted without giving anyone a chance anymore.

Words matter a lot to some individuals who are very, very sensitive.

Jeff

LeoPa profile image
LeoPa in reply toJustasheet1

Sorry,I was stating the obvious. Though apparently not obvious to everyone.It should not have been in reply to you.

Qwerty77 profile image
Qwerty77 in reply toCCLandwell

All the people I know who have tested positive on a lateral flow have the results in seconds......it doesn’t take 15 minutes for result to appear. If your swabing technique is accurate lateral flow tests are very accurate (contrary to a lot of media mugumba - at least here in the UK!)

If you’re on day 5-6 and haven’t felt particularly unwell I suspect you’ll be fine. Those who have poor outcomes tend to be quite symptomatic early on, recover slightly, then deteriorate.

If it’s any consolation my friend (who has a kidney transplant - 10+ years ago) tested positive for COVID mid October - she only tested herself as her 11 year old had it - said the worst bit was the anxiety relating to the fear of what might happen!

In reality she describes feeling like she ‘was getting a cold’ for 36 hours then no symptoms - she’d had 2 jabs.....January and March 21 (AZ)

Newdawn profile image
NewdawnAdministrator in reply toQwerty77

The lateral flow tests issued by the NHS advise a 30 min wait for accuracy. I’ve used them many times.

Newdawn

Qwerty77 profile image
Qwerty77 in reply toNewdawn

I’m aware of that.As do pregnancy tests......but the result is pretty instant if positive......

Newdawn profile image
NewdawnAdministrator in reply toQwerty77

You may well be right but I’ll stick with recommended use nonetheless.

Newdawn

stevebran profile image
stevebran in reply toCCLandwell

Hi CC, I have a pulse oximeter (£20ish) which will show if my blood oxygen levels drop significantly, as this can be “hidden” and is associated with hospitalisation. I find it reassuring to be able to track my blood oxygen levels, especially when I recently had (what turned out to be) a bad cold. My third jab is finally due next Monday after much chasing around for it, and I will feel a lot happier afterwards.Hope you’re feeling better soon and get the treatment you need. It must be a very worrying for you and your family.

Davidcara profile image
Davidcara in reply toannabelle63

Annabelle, there is tons of information explaining why to get vaccinated. But in short; to decrease chances of severe illness and death.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toannabelle63

I'm sorry that you are still suffering from your second vaccination, which also makes me wonder how you would respond to an actual. COVID-19 infection.

Immunity gained from infections and vaccinations wanes over time - that doesn't mean they don't work. That's why our immunoglobulin/antibody counts (hopefully) stay stable over time, rather than growing inexorably higher. The half life of IgG is about 3 weeks, which is why IVIG is usually required regularly when we can't make enough.

When we develop antibody based immunity, our bodies produce both plasma cells and memory B cells. Over time, the plasma cells gradually undergo apoptosis*. If the memory B cells encounter the infection or a booster vaccination, they quickly switch to plasma cells and churn out fresh antibodies which hopefully neutralise the virus, etc and you may not even feel ill.

We also know very well what is in the vaccines. You can find the information on line for any vaccine.

* If B-cells don't undergo apoptosis, but keep dividing, you end up with one of the Non Hodgkin's lymphomas, like CLL. When plasma cells don't undergo apoptosis, but keep dividing, you end up with multiple myeloma or plasma cell myeloma with massive amounts of abnormal antibodies threatening your health.

Neil

CCLandwell profile image
CCLandwell in reply toannabelle63

Get the vaccinations, it’s probably saved my life

LeoPa profile image
LeoPa in reply toannabelle63

Lots of people know what's in it. But the virus is another thing because it keeps mutating all the time. The vaccines were not developed against delta. That is why they are less efficient but still can make the difference between life and death.

mantana profile image
mantana in reply toannabelle63

> So why do we have three shots if they don’t work?

I didn't develop antibodies after the 1st shot, but did develop them after the 2nd shot. Now, 5 months after the 2nd shot my antibody level is only minimal, so it's time for a booster for me. It is really simple.

> I am vaxed but not interested in booster. Still suffering from my second one.

How long ago did you have your second vaccination? What "suffering" do you mean?

Moma64 profile image
Moma64 in reply tomantana

I had the "normal" reactions to my first two....no reaction to the booster.

cll2013 profile image
cll2013 in reply toannabelle63

I understand that the "vaccine" does not prevent a person from getting Covid but it does keep a patient from having a serious reaction needing hospitalization so that is why it is so helpful. It may not be the best situation, but it is all we have to respond to this terrible virus.

Vlaminck profile image
Vlaminck in reply toannabelle63

I had zero reaction to the first two moderna shots (altho doc did a qualitative test, which was positive for antibodies -- meaning, I guess, I had at least one antibody). My booster, however, triggered a more normal reaction, slight fever, a bit "off" feeling, very sore arm -- only for a day or two but yea! a reaction like normal people. Had a quantitative antibody test few weeks later and apparently have a decent amount of antibodies -- so I'm very glad I got booster, and planning to get 4th after 6 months assuming I can.

jacjar1 profile image
jacjar1 in reply toannabelle63

Like any other vaccine it is not 100% effective in prevention.

Justasheet1 profile image
Justasheet1

Call the closest ER and ask them if they have it.

DriedSeaweed profile image
DriedSeaweed in reply toJustasheet1

And don't wait.. need to do this early on.

CCLandwell profile image
CCLandwell in reply toDriedSeaweed

Thanks for your advise. I found a place, takes 2,5 hours and cost $40 USD

Justasheet1 profile image
Justasheet1 in reply toCCLandwell

Get going. The sooner the better.

CCLandwell profile image
CCLandwell

Already received regeneron, You put a fire under my feet thank you

Justasheet1 profile image
Justasheet1 in reply toCCLandwell

🙌 great job

in reply toCCLandwell

Awesome! Keep us up to date.

Smac29 profile image
Smac29

That’s great!!

rlajbsmith profile image
rlajbsmith

If I were you, I would take NAC, Vitamin C and D, and Zink. NAC will help with your lungs. Hope you feel better soon.

CCLandwell profile image
CCLandwell in reply torlajbsmith

Thank you. I am on day six and my lungs are clear. I believe the vaccine kept it out of the lungs, I just received the regeneron today to give me an extra boost. Doctor checked my lungs and said they sound great

rlajbsmith profile image
rlajbsmith in reply toCCLandwell

Glad to hear. I take NAC and the other vitamins daily anyway to help with my immunities.

E-Lynn profile image
E-Lynn

"Sadly I live in California with a woke policy if anything that helped Trump must be bad. ". Hmm CCLandwell, it appears you are new to our state. Hopefully over time you will realize what an intelligent science oriented and diverse state we are. Let's all remove "woke" from our vocabularies, shall we?

Justasheet1 profile image
Justasheet1 in reply toE-Lynn

E,

That’s your contribution to this post? The man is fighting off Covid. There was no sympathy or advice, just a lecture on your diverse state of California and what he is allowed to say!!!!!

Please, scroll on through. I hope that I didn’t offend you or anyone else but I just WOKE up and haven’t had my coffee yet.

CCLandwell deserves our congratulations for getting vaccinated x3, getting the antibodies and reporting on his journey, not a vocabulary lecture from you.

Jeff

MN1999 profile image
MN1999

Vaxxed and nonvaxxed spread c equally. From whatI have read vaxxed may spread more because they have fewer symptoms. The only benefit it supposed to be less serious illness.

Justasheet1 profile image
Justasheet1 in reply toMN1999

MN,

Please skim through AussieNeil post if you care.

healthunlocked.com/cllsuppo...

Jeff

michaeledward profile image
michaeledward in reply toMN1999

Vaxed people generally carry less of a load of the virus, so logically and generally speaking, vaxed people with fewer symptoms would spread less of the virus than un-vaxed people. (Not to mention that, it seems to me through my observation, vaxed people are more likely to wear a mask than un-vaxed people and this alone would reduce the spread.)

CBME profile image
CBME

So in California they don't offer the monoclonal antibody cocktail? I got one yesterday - Regeneron I think - but then I am on the east coast. See if you can get the infusion through your doctor. Hospitals here offer it on an outpatient basis. 20 minute infusion, hour observation and you are headed home. I wish you luck and good healthy outcomes.

Srli profile image
Srli in reply toCBME

Yes, you can get the monoclonal antibody treatments in any city here.

Palmetto profile image
Palmetto in reply toCBME

It is also available subcutaneous injections 1 in each arm and 1 in each side of the stomach total 4 injections. Took less than 10 minutes for whole process. No reaction that we know of and he did not get Covid. It has been 3 weeks now. Although since his neutrophils dropped but it had also been on O/V treatments. So time will tell. But it was worth getting it.

CCLandwell profile image
CCLandwell in reply toPalmetto

Still many non vaccinated people who have also nit gotten Covid

Palmetto profile image
Palmetto in reply toCCLandwell

Or they had it without severe symptoms or were asymptomatic and unknowingly spread it to others. In my family, my son and daughter in law both had covid - unvaccinated. We were exposed to them and were vaccinated and did not get covid. I would have been terrified to have gotten covid a year and a half ago before we knew more about how to treat it. Hospitalizations are predominantly in those who were not vaccinated and those who were vaccinated and hospitalized had co-morbidities that caused them to be more susceptible.

CCLandwell profile image
CCLandwell in reply toPalmetto

I’ve probably been around people with Covid dozens of times not knowing and never got it prior. I don’t believe the. Vaccines stop you from getting the delta version but helps it be more mild

CBME profile image
CBME

My infusion was ordered through the local Urgent Care Clinic who did my covid test. See if you can go that route.

Justasheet1 profile image
Justasheet1 in reply toCBME

CB,

He got it yesterday and seems to be doing better. He posted about his experience.

I’m encouraged that all the Forum members seem to be doing great after receiving these life saving infusions.

Jeff

CBME profile image
CBME in reply toJustasheet1

Great!!

Justasheet1 profile image
Justasheet1 in reply toCBME

CBME,

How ru feeling?

Jeff

CBME profile image
CBME in reply toJustasheet1

Feeling fine but then my only symptoms are lack of taste and smell. But the infusion was easy and uneventful. Thanks for your concern.

Justasheet1 profile image
Justasheet1 in reply toCBME

🙌🥳👍

Ibru profile image
Ibru

You need to get monoclonal antibody treatement right away. Covid can turn bad quickly in people with CLL. The longer you wait, the less effective the treatmet is. Try the following resources. Don't give up until you get them.1-877-332-6585

arcgis.com/home/item.html?i...

protect-public.hhs.gov/page...

occovid19.ochealthinfo.com/...

CCLandwell profile image
CCLandwell in reply toIbru

I did get monoclonal treatment yesterday

zaax profile image
zaax

Why did your workplace allow an unvaccinated person in to the workplace, especially when they know your immunocompromised - talk to your union rep.

CCLandwell profile image
CCLandwell in reply tozaax

Not every job union or are all companies pro vaccination

cchapman14 profile image
cchapman14

Here's my experience with covid and vaccines: I've had CLL for more than 5 years, currently on Calquence maintenance, doing OK. Have had two Pfizer shots + booster. I went on a 5K-mile road trip and somewhere along the way, despite doing the best I could with masking, avoiding crowds, etc. came down with a fever and felt like crap in Las Vegas. Tested positive for covid at an Urgent Care clinic, and they referred me to a local hospital, where I got the Regeneron infusion. Spent the next two nights at the hotel rucuperating, then drove the 2500 miles back home. I am now 95% recovered (still low body temperature), feel OK one month later. Docs say they have no data as to whether I can get it again given 3 shots + covid. Was told antibody tests don't yield any useful information as to your degree of protection, if any, in the immunocompromised. I'm convinced if I'd not been vaccinated, I would have had a far worse outcome.

Interestingly, my husband, who was with me the entire time, cooped up in a car 8-10 hours per day, had no symptoms, and tested negative twice. The vaccines definitely worked for him!

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