Covid Anti-body Tests through LLS

[michaeledward]

The Leukemia and Lymphoma Society has set up a registry and is offering a testing program to patients. Sign up through the LLS COVID -19 Patient Registry at:

ciitizen.com/lls/

[stevesmith1964]

It's an interesting project, but I am not sure what it would really achieve.... unless knowing you have antibodies changes your behaviour and gives confidence to be less vigilant. I have no antibodies but I did I wouldn't do anything different to what I do now if I had antibodies. Or am I missing something?

[JigFettler Volunteer in reply to stevesmith1964]

You have made an important point.Knowing if antibodies infact were able to protect us then it would change my behaviour.

We don't know that.

And we are told not to assume that and behave as we are NOT vaccinated.

Nevertheless, holding a registry, will in time indicate how we do as a vulnerable group.

Given the complexity of the immune system, of our myriad of behaviours, notwithstanding treatment complexity impact, and our co-morbidities, gasp... the behaviour of virus, my brain aches trying to fathom how all this will evolve.

You have not missed anything. And, do remember your T cells, and macrophages etc, all working to protect.

Jig

[stevesmith1964 in reply to JigFettler]

It is complex and regardless of antibodies, behaviour will be personal choice. I have no antibodies so currently don't go into crowded indoor venues like pubs , restaurants and soft plays ( I am a full time dad to a 4 and 2 Yr old). Probably my biggest risk is my wife as she travel nationally and internationally.

[JigFettler Volunteer in reply to stevesmith1964]

I get it!

You have to be strategic in your behaviour. Complex.

If you feel able to share some of the "how" - I know many would find that very useful.

How ARE you coping?

Jig

[stevesmith1964 in reply to JigFettler]

I cope fine. I have never worried at all about my diagnosis , in fact when I was diagnosed at stage 4 in November, me and my wife were very relieved. We saw the initial blood film review following my yearly check up and thought it was something far more serious. To put that in context I worked in pathology for 40 years, last 8 of those years in the Myloma space. My wife has a vast knowledge of B cell diseases and 20 years in a clinical setting. It's easy to cope as at 57 I have 5 fantastic children...26,24,21 , 4 and 2.... and I plan to see my youngest graduation in the 2040's. The key is stay positive and only red decent red wine.

[JigFettler Volunteer in reply to stevesmith1964]

I do understand better now - not an altogether unfamiliar environment for you!

Does knowing more of the medical science help, or just increases the anxiety? After all its not all about Covid, other infections need to be avoided. I write rhetorically - knowing others will read the thread. Staying safe has never been more relevant, esp here in the UK with the massive Delta and freedoms now enjoyed. To me feels less safe than hitherto.

Jig

PS Red wine choice tip... totally with you there!

[Davidcara in reply to stevesmith1964]

Yes, knowing if I have antibodies could contribute to my behavior. For example, I have zero antibodies so I continue everything, and I mean everything. If I had 2000 antibodies, I would probably still continue everything but, with a lot less psychological stress in my life.

[stevesmith1964 in reply to Davidcara]

Totally understand. I extremely fortunate I have never suffered from stress or anxiety in my life and my CLL is just something in the background. MY wife is a different case as she worries for me alot.

[Davidcara in reply to stevesmith1964]

Wow !!! You are lucky, never to experience stress or anxiety.

[stevesmith1964 in reply to Davidcara]

I know ... managed to get to 57.... 5 kids 26,24,21, 4, 2..... chilled is the only way to get through it...

[michaeledward]

Not trying to cause anyone any anxiety nor trying to start a debate about antibody testing. Just passing along a link that NIH gave to me with the comment that if I was interested in getting an antibody test on someone else's dime . . .

BTW , NIH's advice to me last month, regardless of the outcome of the antibody test, is to "avoid crowds, wear a mask and avoid the locker room at my local fitness club". Ignore my post if you are not interested.

[jerard59]

I entered the first round of testing prior to entering therapy and came up with no anti-bodies after the Pfizer Vaccine. The LLS findings report was recently released and seems that certain B-Cell malignancies have a poor response, of which I was one. I was then contacted as part of the follow up study that was discussed in the report to analyze T-Cells. I recently gave the blood sample for the follow-up and hopefully I get better news. I entered the study not to change my behavior one way or the other, but to help researchers understand what's going on in our bodies.

[DanBro1 in reply to jerard59]

I donated 2 vials of blood this week to the LLS T-Cell study. I was told that we will not be give individual results, like we were on the antibody study.

[michaeledward in reply to DanBro1]

Hmmm. Interesting. I really would not have chosen to go through the onerous process (it took me nearly 2 hours to complete their sign up process) of signing up with LLS had I been aware that I would not be getting individual results. I intend to follow up with LLS to confirm. Thanks for the heads up.

[michaeledward in reply to michaeledward]

I just got off the phone with LLS. They told me I would get individual covid antibody results.

[DanBro1 in reply to michaeledward]

Yes, I received both results on my antibody tests from LLS. You will not get individual results on the new T-cell study.

[michaeledward in reply to DanBro1]

I just now realized you were referring to the results of the T-cell study, and not the individual antibody results. Sorry for the confusion.

[Davidcara in reply to DanBro1]

You never know, the T cell result could appear on Lab Corp patient portal. If you really want to know about your T cells you could see about getting your own test. It’s about $150 US dollars. It would be less stressful for me, if I knew I had some protection. Even if that does not change my current precautions

[michaeledward]

Personally, I really wasn't interested one way or the other on getting an antibody test was inasmuch as I was and still am fairly certain that my antibody level is relatively low or nonexistent even though I have been fully vaccinated. But once NIH gave me the link to LLS, I decided to sign up for the antibody test so that I would know for certain.