He Y'all! My oncologist replied, "don't panic." She also shared a link that she says will be reassuring (I think she's right):
creakyjoints.org/living-wit...
immunocompromised/
BTW - my initial post garnered so many replies, I simply can't answer them all. So, please don't take offense if I don't respond. Jungle Jim
This link is reassuring and (for the most part) correct. However, it misses one major point. The COVID spike protein tests all were developed to detect antibody production after COVID infection. There has been no study done to determine how accurate these tests are for post vaccination antibody titers.
It is also a mechanized and inexpensive test - $4/test to run! Here is a brief description of what it is for (by a regional lab). prnewswire.com/news-release...
It was FDA approved for post COVID infection less than 2 months ago. It has never been approved for post vaccine testing - and I expect they would love to have that approval. So the test is being used "off label." There are other tests but they are all inexpensive automated chemi-luminescent assays.
As an example, I've had my CBC done twice on the same day by the same lab. Results can be off by 30-40%. Automated CBC's have been around for years and years, and even they are not that accurate. To me when they call the Spike antibody assay "semi-quantitative" - it doesn't even make sense at all. It's either quantitative or qualitative.
Probably half the MD's who order or read these tests do not know how they are performed, or how "quick and dirty" they are.
So lets all say that we have to wait until something better comes around - or this test is proven to have value in real life. In the interim, we need to assume we all are not fully protected after vaccination.
You saved me 30 euros. I definitely won't get tested for antibodies 😊
I'm glad it was helpful Leo... but 'stay tuned,' with the ongoing research, I expect more info will eventually become available in the fullness of time.
Thanks. Reading the original post, scanning the report, and looking at your answer seems to mean that:
1. there is no point in taking these tests ATM, as no-one knows what the results mean anyway, and
2. we should continue to be cautious (masks, social distancing) if immunocompromised until we have more reliable tests and data.
Please correct me if I am misunderstanding anything.
That's my understanding... and it will be my strategy for the foreseeable future. If you haven't already done so, I highly recommend you go to the link and read the article I posted in my "Follow Up to Dire Warning."
Jim - it is not necessary to reply to each poster individually. Often a summary of points is more than enough.
Okie-doke, TX!
I’m afraid the link comes up as a ‘bad request’ for me.
Works for me:- "Beckman Coulter's SARS-CoV-2 IgG II antibody test receives Emergency Use Authorization from the FDA- Lenco Diagnostic Laboratories among first to offer Beckman Coulter's semi-quantitative antibody test; Lab expects clinicians will use assay to monitor patients' COVID-19 recovery and assess immune response over time[1]
- Assay available to ship in the U.S. and countries accepting the CE Mark"
I'm sorry Graham... it's too long to paste here, so all I can do is paste the link again and suggest you give it another shot... creakyjoints.org/living-wit...
It basically says (among other things) that antibody testing for vaccinated CLL patients is not recommended... hope you can see it this time.
Unfortunately not, but you’ve given me the gist - thank you.
thank you for posting that article
I saw a new onc/hemo yesterday. I asked his opinions of the spike antibody test and how safe would it be for my out-of-state, flying in, vaccinated daughter and her partner to visit for a few days. He does not get the spike protein antibody test for his pts b/c unknown what the results mean. He looks more closely at a pt's IgG level to suggest degree of protection. For pts with a low level, less than 500, for eg, he assumes little vaccine immunity. He asks those pts to be very cautious and maintain a full safety protocol. In my case, my IgG in October was 956. He said he was relatively confident I'd be safe to have them with me.
I rechecked the Israeli study. Normal immunoglobulin levels was one of four findings that predicted better response rates to the vaccine in CLL pts. The other 3 were: treatment naive, younger age, and female.
I'd love to hear from our members their antibody pos or neg test response rates in the presence of their low or high immunoglobulin numbers.
By way of comparison I am 75yo, into 7th year of w+w, and am 13 q mutated. My ALC has plateaued in the 55-60,000 range, HGB is 13.7 ,and Platelets 169. Have enlarged internal nodes in chest and left axillary and spleen is showing enlargement.
BTW, when I asked the oncologist about the Spike Protein test, she replied: "That is not the current CDC recommendation. At this point, simply continue to wear a mask in large groups and wash your hands frequently."
I did the spike protein test, it came back positive. My IgG levels have not been above 350 since diagnosis in 2019. W&W, got Pfizer shot.
That's great news Alex, but the more I read (and understand), the more I'm convinced that there are still too many uncertainties. Most 'experts' are urging to disregard the results of these tests, and rely (instead) on due caution. That will be my strategy... possibly for the rest of my life.
This is not new info. And not sure why it is being inferred as don’t panic. Today the CDC just said that fully vaccinated individuals can gather indoors and outdoors without masks or social distancing. So that puts us in an even more precarious position. How do we continue to mask and social distance when no one else follows that? Now we will have to be even more careful and perhaps even further isolate ourselves.
The CDC has failed again! I used to trust their advice. Open slowly and require masks just in case would make sense. You no longer need masks doesn’t! Disgusted!
It's incredible that the CDC has taken a "popular" stance driven by politicians and their desire to please their constituents. COVID is still a serious threat, but we're more concerned about rushing to return to status quo? This is just more evidence that we've finally arrived at the "Brave New World"... I don't expect it to get any better with the passage of time!
Not really incredible. The CDC is responsible for their “opiate guidelines” that has left a great deal of pain patients in horrible pain. These guidelines are not really within the purview of the CDC, but they came out with them anyway. My wife is collateral damage from their draconian guidelines.
So it appears that the CDC just opens its mouth and expects people to trust and believe what comes out of it. The reality is that their latest guidance on masks is really bad advice. We’ll never know what motivated it, but it makes no sense.
Wait till they tell them they have to put them back on! Everyone wants to celebrate before graduation, doesn’t work that way with Covid! Stay safe, be your own best advocate!
Quite frankly, I sense that the CDC has been a joke for quite some time now. Remove masks if vaccinated? You’ve got to be kidding!
Do they really believe that all or most unvaccinated people will go by the “honor” system and wear masks? How naive!
People are moving in this direction (mask less) anyway. The CDC has little choice but to go with the flow. Will vaccinated citizens continue to wear masks? Nope. How about the non believers? A resounding No! We are about to encounter a difficult period for the immune compromised. Life is returning to some semblance of normal but there are still significant risks present. Hang on to your N95s!!!
Yes, definitely N95’s! There are so many vaccine-hesitant people that it is a virtual minefield out there for us. That will not change easily. It doesn’t take many unvaccinated people infected with a variant to make the outside world full of COVID.
I guess this latest guidance makes me angry. There are a lot of immunocompromised people out there (like us!) that now have a lot more to deal with.
Feels like lockdown for life for some of us. I too am angry. I was looking for a slow, cautious reopening. Stupid me!
Hemotologist wants to do a follow up visit.
Follow ups when on Ibrutinib 
Follow up blues
3 month follow up 
18 month Follow up results with Ibrutinib/Venetoclax clinical trial
