USA LLS Blood testing after 3rd / Booster Vaccination Leukemia & Lymphoma Society

[lankisterguy]

I just received an email from the LLS offering to test my blood after my 3rd / booster vaccination.

Hi Len,

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As always, thank you for your participation in the LLS National Patient Registry,

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a project of the Michael J. Garil Patient Data Collective. With the help of citizen scientists like you, the Registry has already reported critical information about the safety and efficacy of COVID-19 vaccines across all major blood cancer and treatment types.

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Information like this guides our national vaccination strategy and helps healthcare providers and patients make informed decisions about care.

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We were amazed by the enthusiasm of this community once again when we wrote last about our plans to study the efficacy of the additional COVID-19 vaccine dose recently recommended for people with blood cancer. Several thousand of you wrote to let us know you were planning to, or had already received, another vaccine dose.

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To ensure we have accurate, up-to-date information and that we can provide LabCorp slips for antibody testing to everyone who needs one, we ask that you please complete a brief survey. To assist us in updating your records, you must complete this survey even if you already sent us an email noting your plan to get another vaccine dose.

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This online survey should take about 5 to 10 minutes and asks about:

•Your plans for an additional vaccine dose—confirming which vaccine(s) you have received or plan to receive, and when (please have these dates available when completing the survey).

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•Whether you had COVID illness at any time after completing your primary vaccine series (two doses of Pfizer or Moderna, one dose of Johnson & Johnson)

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•Treatments you have had related to your cancer over the last 4-months (a list is provided for you to select from).

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If your survey indicates that you have already had or plan to have another COVID-19 vaccine soon, and you need an updated LabCorp lab slip, we will send you a new one by email with instructions for getting an antibody blood test.

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We want to remind you that the best strategy for blood cancer patients, even after receiving another COVID-19 vaccine dose, is to Get Vaccinated, Act Unvaccinated.

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COVID-19 is particularly dangerous and deadly for people with blood cancer, so we urge you to take every precaution to stay safe.

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On behalf of LLS, thank you for becoming a citizen scientist and helping us fulfill our mission to improve the quality of life of blood cancer patients and their families. We are grateful for your support.

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Sincerely,

Larry Saltzman, MD

Executive Research Director, LLS

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Len

[Justasheet1]

I got one too.

[gardening-girl]

Thanks for the heads up, Len. I just checked my email, and buried among my extraneous messages was the critical LLS email! So again, thanks, I could have missed it.

[bkoffman CLL CURE Hero]

Cool. I didn't get the letter, yet.

[Ladydi49 in reply to bkoffman]

Hi Dr Koffman. I just filled out the form to participate. The question is do you know how long after the booster one has to wait to be checked. Mine was 8/17/21

[bkoffman CLL CURE Hero in reply to Ladydi49]

Don't know, but probably about 3 weeks

[Ladydi49 in reply to bkoffman]

Ok thanks

[lankisterguy Volunteer in reply to Ladydi49]

The LLS letter I got today says: "If you have received your booster, you can still participate. Please have your labs drawn 3-5 weeks after your booster. "

Len

[wmay13241]

Regardless of what the test shows, it will not change our behavior: mask up, wash hands, social distance, avoid crowded places and bars.👍👍👍

[LeoPa in reply to wmay13241]

You don't have to win a fight if you don't fight it. It is so much easier to just avoid it.

[lankisterguy Volunteer in reply to LeoPa]

I agree with you and wmay13241 , regardless of the test results I will still not remove my well fitted N95 respirator indoors with others in the same room with me. If I am eating, drinking or singing, it will be outdoors and I will be upwind of everyone else. -

I just want to know the results for my own information and to contribute to the knowledge base on whether long term use of Venetoclax without Obin or Ritux allows some CLL people to develop antibodies.

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And hopefully. some day, they will correlate the T-spike levels with some level of resistance to COVID-19 infections.

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Len

[Ladydi49 in reply to wmay13241]

Here in the U.S. they say re us immunocompromised individuals: “get the vaccines act unvaccinated” in other words continue to mask up, wash hands and social distance.

[BeckyLUSA]

Got mine as well. Can’t wait to do it and see results.

[lexie]

Good to know. Haven't found my letter yet.

[nvrbeold62]

I got that same letter yesterday too, but had actually received a lab order back on Aug 18. On Aug 16th, I received and replied to an LLS email indicating that they were going to study booster efficacy in patients. The response I got on Aug 18 with the lab order read as follows:

Thank you for your participation. We are gearing up to launch a specific study for booster responses.

We will support a blood test prior to a booster and then 3-5 weeks after. If you had a blood test 6 weeks or less prior to your booster, you do not need another test until after you have received your booster.

After you receive your booster, please send us an e-mail with the date you received your booster and the brand.

Attached is a lab slip for you to use at your next appointment. We have filled in your name, date of birth and gender. Please review and let us know if you see that any corrections are needed. Of course, you will need to print this form and carry it with you to the lab. The lab cannot accept a form as displayed on a mobile device. And we have no ability to fax these forms to the lab or call them with a verbal order.

[Lavinia-Blue]

Unfortunately, it seems that you have to give access to you medical records for this.

[lankisterguy Volunteer]

The results of your blood test are private until / unless you give permission for LLS - Ciitizen to see them, so yes you will be asked to give permission. -

If you want to pay for the tests yourself, and not allow them to be used for the research you can withold permission

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Len

[lankisterguy Volunteer]

I just received this follow up email today.

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Thank you for your participation. We are gearing up to launch a specific study for booster responses. We will support a blood test prior to a booster and then 3-5 weeks after.

If you had a blood test 6 weeks or less prior to your booster, you do not need another test until after you have received your booster.

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If your previous blood test was <0.4, you do not need another test until after you have received your booster.

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If you have received your booster, you can still participate. Please have your labs drawn 3-5 weeks after your booster.

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Attached is a lab slip for you to use at your next appointment. We have filled in your name, date of birth and gender. Please review and let us know if you see that any corrections are needed. Of course, you will need to print this form and carry it with you to the lab. The lab cannot accept a form as displayed on a mobile device. And we have no ability to fax these forms to the lab or call them with a verbal order. Please use the lab slip for your appointment before and after your booster.

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You can find a LabCorp site and make an appointment by using the link below. We understand that some sites are weeks out in accepting appointments. We also know that each lab accepts walk in patients if you want to go that route.

labcorp.com/labs-and-appoin...

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After your blood draw, the results should be available in 3-5 business days. You should be able to receive the results in either your LabCorp portal (if you have an account set up) or you can call LabCorp at 1-800-282-7300 opt 3, opt 4 to get their help to see your results.

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For an explanation of the results, we refer you to the web page we posted.

ciitizen.com/llscovidstudyr...

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Once again, thank you for helping LLS to help blood cancer patients. We value your feedback and any questions you may have.

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Thank you for your time and consideration.

Larry Saltzman, MD

Janaela Scott, MSN, RN

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Dr Larry Saltzman is pleased to present this webinar discussing the LLS Covid Antibody response research recently published in "Cancer Cell." Click on this link watch this 56 minute presentation as well as a 9-minute presentation regarding Covid boosters. lls.org/professional-educat...

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It is yet undetermined what level of antibody to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease. Studies are underway to answer this question and will provide valuable insights into the correlation between protection from vaccination and antibody levels. It is important to note that LLS will not provide an interpretation of your test results. The results should always be assessed in conjunction with your medical history, clinical examination, and other findings. You should contact your healthcare provider for additional guidance on how to interpret your test results.

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Len

Labcorp email LLS Ciitizen COVID19 vaccine blood test 2021-09-03.

[E-Lynn in reply to lankisterguy]

I was very disappointed in the LLS study that when I filled out the questionnaire, it did not include Venclexta aka Venetoclax. I emailed Saltzman but didn't hear back. I did the study and had antibodies 52- then 83 and paid Labcorp $10 to do another test 6 months after my last jaab and I was up to 104 units per m/l. My Venclexta was mono .. no Rituxan or Obinutuzumab so that may be why I got the better response. My other docs say those on Ibrutunib may also not respond well to the jab. Bottom line: you can get the same COVID-2 SAR Semi-Quant Ab test from labcorp for $10. Sign up on their portal, pay $10 for their "referal" and make an appointment. (And let me know if you did get a growing response like I did, how are your platelets doing? Mine have crashed.)

[lankisterguy Volunteer]

I have signed up with LLS and they provided a script to pay Lab Corp for the test next week- exactly 4 weeks after my 3rd dose. They have corrected the issue with Venetoclax mono vs. V + O or V + I in the latest questionnaire.