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CLL Society COVID-19 guidelines, & Explaining to Family and Friends Why the CDC Guidelines for Those Vaccinated - Do Not Apply to us

lankisterguy profile image
lankisterguyVolunteer
7 Replies

COVID-19, it’s not over! CLL Society will keep hammering away at this topic because we are continuing to hear that the general public, CLL patients, and even healthcare providers are still unaware that COVID-19 vaccines may not reliably protect the immunocompromised. The CLL community is lucky to have fellow patients whose voices of concern have been tremendously amplified by media outlets and have garnered some recent attention. Read about those who have been sounding the alarm on our behalf in the article, “It’s Not Over Yet”: Uncertain Protection from Covid Vaccines Leaves Chronic Lymphocytic Leukemia (CLL) Patients Still At Risk."

cllsociety.org/2021/06/its-...

Dr. Koffman shares what Michele Nadeem-Baker (CLL patient and cancer advocate), Greg Simon (CLL patient, health policy consultant, and leader of the Biden Cancer Initiative), Dr. Robert Montgomery (transplant surgeon), and Dr. Lindsay Ryan (ER physician who is also immune-compromised) have been saying in the media about this very important subject. It’s no time for silence!

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Help When You Need It

Consider sharing these guidelines created by CLL Society with friends and family, which explain why it is still important for those with CLL to continue strict infection control measures for prevention of COVID-19:

Explaining to Family and Friends Why the CDC Guidelines for Those Vaccinated Against COVID-19 Do Not Apply to Chronic Lymphocytic Leukemia Patients.

cllsociety.org/2021/04/expl...

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Conference Coverage

ASH 2020: Dr. Davids Discusses Duvelisib and Venetoclax, an Oral Time-Limited Treatment for Chronic Lymphocytic Leukemia (CLL). The team at Dana-Farber Cancer Institute is testing whether the combination of duvelisib (Copiktra™) and venetoclax (Venclexta®) will lead to deep remissions that would allow for oral only therapy of one year duration. Learn more about this ongoing Phase I/II clinical trial.

cllsociety.org/2021/06/ash-...

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Financial Assistance

There are programs to help with financial assistance for CLL patients and families. These include

the Urgent Needs Program and Co-Pay Assistance Program. These LLS programs can help

CLL patients cover out-of-pocket expenses for labs, scans, tests, insurance premiums, and co-pays,

whether you are in watch and wait or active treatment. The PAN Foundation’s FundFinder is a free

resource to help track whether a patient assistance program and other support services are available. Learn more about these programs and other forms of financial assistance here.

cllsociety.org/living-well-...?

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In Case You Missed It

If you missed the June 29th Webinar presented by Lab Scientist Dr. Susan Leclair called, “Learning to Decode Your Blood Test Results” please consider watching at your leisure. It was CLL Society’s highest attended webinar to date! There was so much helpful information shared about how to interpret blood test results and why it is critical to keep track of trending labs in CLL.

cllsociety.org/2021/07/cll-...

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lankisterguy profile image
lankisterguy
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7 Replies

Thank you for all you provide!!

Fran57 profile image
Fran57

Thank you, from the bottom of my heart, for all that you do and keep on doing!Stay safe,

Fran 😉

ChristyAnne_UK profile image
ChristyAnne_UK

Thanks, Len. x

Peggy4 profile image
Peggy4

Thank you for this.Peggy

Mwagner profile image
Mwagner

Based on input from this board I had blood drawn yesterday for Covid antibodies. What should I know when the results come back next week! Thanks to all for great information!

lankisterguy profile image
lankisterguyVolunteer in reply to Mwagner

Hi Mwagner,-

I would love to give you a simple, clear answer, but alas I cannot. "It's complicated"

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Yesterday another member posted a link to a expert opinion that boils down to something like: If you get a number in range of the test we don't know if you are protected or not, and if you get a number below the range, we don't know if you are unprotected.

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Here's the link to yesterday's posting: healthunlocked.com/cllsuppo...

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And when you are on that page, look for the box labeled : "Related Posts" to follow the links to many other posting and replies.

Related Posts

*Covid Vaccine for Immunocompromised healthunlocked.com/cllsuppo...

*Post-Vaccine Testing to Measure Covid-19 Immune Response healthunlocked.com/cllsuppo...

*Promising new vaccine for Covid-19 shows improved antibody response healthunlocked.com/cllsuppo...

*Covid Vaccine Antibody Test healthunlocked.com/cllsuppo...

*Positive Covid Vaccine Antibody Response healthunlocked.com/cllsuppo...

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Len

Mwagner profile image
Mwagner

Thank you for an incredibly quick reply

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