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CLL Support

23,337 members•40,045 posts

All posts for February 2022

acquired angioedema

Has anyone been diagnosed with AAE caused by their CLL.? I was diagnosed with CLL in 2008, but the cause of all the swelling attacks I was having was not...

Has anyone been diagnosed with AAE caused by their CLL.? I was diagnosed with CL...

hertler13

•3 years ago

4 Replies

Immunology Consult? (New here)

First time posting...I was diagnosed w/ SLL/CLL in 2004, treated with 6 rounds of Bendamustine/Rituximab in 2012 and am presently in remission. Never was I...

First time posting...I was diagnosed w/ SLL/CLL in 2004, treated with 6 rounds o...

MiloG

•3 years ago

17 Replies

Switching medications vs interrupting the treatment

If your side effects of a BTK inhibitor become intolerable (even after a dose adjustment) while your blood counts has kept substantially improved, what was...

If your side effects of a BTK inhibitor become intolerable (even after a dose ad...

MikeOr

•3 years ago

34 Replies

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Loss of platlets after affected with covid

I am will CLL under wait and watch since 2003 . My wbc is around 90000. My platlets used to be around 1.5 lakhs and was around 1.15 for last two years....

I am will CLL under wait and watch since 2003 . My wbc is around 90000. My platl...

Ashwas

•3 years ago

7 Replies

I Have Just Completed My 12 Month CLL Treatment Plan

About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw...

About 13 months ago, my dentist commented on swollen lymph nodes along my neck a...

DanBro1

•3 years ago

39 Replies

Bebtelovimab approved by FDA, reduces risk of hospitalisation with Omicron variant of Covid19

Another monoclonal antibody for at-risk Covid patients has become available in the USA...

Another monoclonal antibody for at-risk Covid patients has become available in t...

bennevisplace

•3 years ago

8 Replies

Experience with lower dosage of BTK Inhibitors (Ibrutinib, Acalabrutinib, Zanubrutinib)

For those who were initially on lower than the stanrdard dosage of BTK inhibitors, what was your longer term trajectory ? Did it work in lower dosage, or you...

For those who were initially on lower than the stanrdard dosage of BTK inhibitor...

MikeOr

•3 years ago

20 Replies

Evusheld while on Ibrutinib

Evusheld while on Ibrutinib Wondering if anyone has had Evusheld Intramuscular injection while on ibrutinib, and how did it go? Of course, now it will be 3...

Evusheld while on Ibrutinib Wondering if anyone has had Evusheld Intramuscular...

Davidcara

•3 years ago

10 Replies

4TH Covid Jab and bad reaction anyone else?

I had my fourth Covid jab last Saturday and about six hours afterwards I started to feel very ill, headache increasing weakness very thirsty and hungry...

I had my fourth Covid jab last Saturday and about six hours afterwards I started...

Greencyclist

•3 years ago

27 Replies

Updates on Evusheld Dosage per FDA (USA)

On 2/24/22 the FDA announced that a larger dose of Evusheld is needed. Here is the link to the article:...

On 2/24/22 the FDA announced that a larger dose of Evusheld is needed. Here is ...

Granna45

•3 years ago

19 Replies

Resurrection of Hepatitis B

I have been diagnosed with CLL for 7 years (Now stage C) and was about to start Chemotherapy (BTK inhibitor). I had a short illness with Hepatitis B in 1975...

I have been diagnosed with CLL for 7 years (Now stage C) and was about to start ...

Virosafe2001

•3 years ago

5 Replies

Lateral flows may miss covid so don’t ignore PCRs

The take home message is use lateral flows but if you have symptoms and test negative take a PCR to be sure you aren’t infected...

The take home message is use lateral flows but if you have symptoms and test neg...

Bartlet

•3 years ago

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Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia

Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL....

Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib ...

CLLerinOz

Administrator•3 years ago

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Wendy Ramsey Richter's Research Fund

https://danafarber.jimmyfund.org/site/TR;jsessionid=00000000.app20005b?team_id=10530&fr_id=1200&pg=team&NONCE_TOKEN=C91D0CE812D5BC4028757370B1DD3038 This is a...

https://danafarber.jimmyfund.org/site/TR;jsessionid=00000000.app20005b?team_id=1...

beanlake14

•3 years ago

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What are teardrop cells?

Good morning! I had my 3-month blood work completed yesterday, and the results said something that I have never seen before. The report indicated that "tear...

Good morning! I had my 3-month blood work completed yesterday, and the results s...

Horatio2

•3 years ago

3 Replies

Interpretation of results

Dear CLL-fellows and specialists, I am in Nepal with my wife due our personal work. I decided to see the hematologist and seek his opinion. Accordingly, I went...

Dear CLL-fellows and specialists, I am in Nepal with my wife due our personal wo...

Sagarcanada

•3 years ago

10 Replies

Results - COVID survivior, 4 shots, antibodies and on...

My specialist, Dr Shou Ma, MD, PhD, of Northwestern University Hospital tells me to get every vaccination she recommends. This includes all four shots (had...

My specialist, Dr Shou Ma, MD, PhD, of Northwestern University Hospital tells me...

Irishgreek

•3 years ago

11 Replies

Remission and temporary discontinuation of Ibrutinib

Is there any information about effects of temporarily discontinuing Ibrutinib after a temporary remission has been achieved ? Would it become less efficient...

Is there any information about effects of temporarily discontinuing Ibrutinib af...

MikeOr

•3 years ago

10 Replies

Accessing vaccinations to prevent infections

Hi has anyone else fallen into the trap that I seem to be in. At the point of diagnosis my consultant gave me a booklet from CLL Support outlining a list of...

Hi has anyone else fallen into the trap that I seem to be in. At the point of d...

Dyzzie22

•3 years ago

7 Replies

LLS - Ciitizen National Patient Registry COVID-19 study (USA) Our registry is still accepting new blood cancer participants.

As we approach the one-year anniversary of the LLS National Patient Registry COVID-19 study, we are humbled by the commitment of the more than 11,000 blood...

As we approach the one-year anniversary of the LLS National Patient Registry CO...

lankisterguy

Volunteer•3 years ago

4 Replies

Flow cytometry

Received flow cytometry report with positive Cd45 marker but every other marker is negative with no signs of clonality. I checked that Cd45 positive expression...

Received flow cytometry report with positive Cd45 marker but every other marker ...

degenx_365

•3 years ago

14 Replies

Venetoclax+Rituximab OR Acalabrutinib - What is the best choice?

Hi All, At my last appointment with my consultant I was told that I was nearing the need for treatment for my relapsed CLL. Quick History...

Hi All, At my last appointment with my consultant I was told that...

Rich316

•3 years ago

19 Replies

After 2 Vaccinations and 2 Boosters Still Zero Antibodies!!

Received my LabCorp antibodies report yesterday (Feb 21, 2022). After 3 full-dose Moderna vaccinations and 1 half-dose Moderna booster, I show "No detectable...

Received my LabCorp antibodies report yesterday (Feb 21, 2022). After 3 full-do...

DanBro1

•3 years ago

13 Replies

Hello!

Hello everyone. New to this place, I'm Laba74. I'm Italian, but live in North Yorkshire (UK) with 3 kids, 2 cats and one husband. Language teacher, positive...

Hello everyone. New to this place, I'm Laba74. I'm Italian, but live in North Yo...

Laba74

•3 years ago

12 Replies

Who do I believe?

I talked with my doctor today, and if I understood her correctly, she said that there is no data out showing CLL patients with my prognostic factors (mutated...

I talked with my doctor today, and if I understood her correctly, she said that ...

Cfarrar

•3 years ago

55 Replies

Evusheld in California

Has anyone living in California been successful in getting access to Evusheld? I am currently being treated at Stanford and they state that Evusheld is being...

Has anyone living in California been successful in getting access to Evusheld? ...

trackrat

•3 years ago

67 Replies

Achy legs and CLL

Hey group! One of common symptoms are achy legs. Those of you that have that symptom know what I mean…. Just an achy feeling similar to post workout...

Hey group! One of common symptoms are achy legs. Those of you that have that s...

Gardengirl44

•3 years ago

12 Replies

Anti bodies

Ive been on Imbruvika for 3 years - I have had 3 vaccinations the last one October - and have just had my anti bodies checked by my consultant with my bloods...

Ive been on Imbruvika for 3 years - I have had 3 vaccinations the last one Octob...

retired46

•3 years ago

28 Replies

Ed Yong piece in Atlantic

A good summary by Ed Yong of The Atlantic on where the immuno-compromised are at right now. Please delete if someone has already posted this....

A good summary by Ed Yong of The Atlantic on where the immuno-compromised are at...

BooksellerGuy

•3 years ago

13 Replies

Venetoclax: The Final Stretch……Do You Have A Uric Acid Problem

I’ve just finished my tenth year since my Stage IV diagnosis of CLL and my questions today are about the incidence of gout in patients who have been in various...

I’ve just finished my tenth year since my Stage IV diagnosis of CLL and my quest...

KevinCLLITP

•3 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2022

acquired angioedema

Immunology Consult? (New here)

Switching medications vs interrupting the treatment

Loss of platlets after affected with covid

I Have Just Completed My 12 Month CLL Treatment Plan

Bebtelovimab approved by FDA, reduces risk of hospitalisation with Omicron variant of Covid19

Experience with lower dosage of BTK Inhibitors (Ibrutinib, Acalabrutinib, Zanubrutinib)

Evusheld while on Ibrutinib

4TH Covid Jab and bad reaction anyone else?

Updates on Evusheld Dosage per FDA (USA)

Resurrection of Hepatitis B

Lateral flows may miss covid so don’t ignore PCRs

Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia

Wendy Ramsey Richter's Research Fund

What are teardrop cells?

Interpretation of results

Results - COVID survivior, 4 shots, antibodies and on...

Remission and temporary discontinuation of Ibrutinib

Accessing vaccinations to prevent infections

LLS - Ciitizen National Patient Registry COVID-19 study (USA) Our registry is still accepting new blood cancer participants.

Flow cytometry

Venetoclax+Rituximab OR Acalabrutinib - What is the best choice?

After 2 Vaccinations and 2 Boosters Still Zero Antibodies!!

Hello!

Who do I believe?

Evusheld in California

Achy legs and CLL

Anti bodies

Ed Yong piece in Atlantic

Venetoclax: The Final Stretch……Do You Have A Uric Acid Problem

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