Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for April 2021

Public comments

I used to be on this site on public comments and now it doesn't seem to be that way and I don't know what I have done, if anyone can be of help I would really...

I used to be on this site on public comments and now it doesn't seem to be that ...

Hotrods4me

•3 years ago

3 Replies

Rare Vaccine Side Effects - Why it's so hard to InvestigateThem

From Nature 1st April 2021 In mid-March, several European countries paused distribution of the COVID-19 vaccine made by the University of Oxford, UK, and the...

From Nature 1st April 2021 In mid-March, several European countries paused distr...

Jm954

Administrator•3 years ago

10 Replies

Astrazeneca and ibrutinib

Hello. I am from Argentina and I would like to know if anyone has received the Astrazeneca vaccine while being treated with ibrutinib. thanks and regards

Hello. I am from Argentina and I would like to know if anyone has received the ...

Bixilon

•3 years ago

10 Replies

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Chinese exploration of nationals for 98% IGHV gene identity cutoff

This is a 2020 article giving details of Chinese study to see if their patients should have the same IGHV gene identity cutoff to suggest Mutation as western...

This is a 2020 article giving details of Chinese study to see if their patients ...

cllady01

Former Volunteer•3 years ago

1 Reply

CLL with “normal” FISH

Hello so while I am diagnosed with CLL, my FISH was normal meaning any abnormalities were not present in amounts sufficient to be detected. And while my...

Hello so while I am diagnosed with CLL, my FISH was normal meaning any abnormali...

Luap001

•3 years ago

14 Replies

Replacement eye lenses while on w and w

Has anyone with cll had their eye lenses replaced? I wear glasses and to do without would need my eye lenses replaced. It seems to be a fairly standard...

Has anyone with cll had their eye lenses replaced? I wear glasses and to do with...

Research123

•3 years ago

12 Replies

Drs. Jennifer Brown and Mazyar Shadman as they discuss the importance of testing before CLL treatment + preparing for appointments

Join CLL Society & CancerCare on Thursday, April 8th from 1:30 - 2:30 PM (ET) as Patty Koffman, CLL Society’s Communications Director, joins CLL experts Drs....

Join CLL Society & CancerCare on Thursday, April 8th from 1:30 - 2:30 PM (ET) as...

bkoffman

CLL CURE Hero•3 years ago

2 Replies

High deletion of 13q ??

Does anyone know the prognosis for being 13q deleted by 85%? I have no other factors other than I am mutated. Just got two conflicting opinions and I would...

Does anyone know the prognosis for being 13q deleted by 85%? I have no other fac...

Cfarrar

•3 years ago

26 Replies

What does IGHV3-33 mean?

I’ve known for years that I am IGHV unmutated. At a recent restaging the test was repeated. Because the IGHV mutation status doesn’t change over time I am not...

I’ve known for years that I am IGHV unmutated. At a recent restaging the test wa...

john-doe

•3 years ago

12 Replies

I've just recently worked my way up to Venetoclax 400mg. I'm curious if anyone had similar side effects:

I've just recently worked my way up to Venetoclax 400mg. I'm curious if anyone had similar side effects: 1. When I inhale, at times I will experience a...

I've just recently worked my way up to Venetoclax 400mg. I'm curious if anyone h...

Nook120

•3 years ago

8 Replies

post-vaccination antibody test

Hi have a question for people with CLL who have already had an RNA vaccine (Pfizer and Moderna) or other. have you done a serological test for antibodies in...

Hi have a question for people with CLL who have already had an RNA vaccine (Pfi...

BART4

•3 years ago

28 Replies

Seeking CAR-T Advice

It’s time for me to get CAR-T. I am currently thousands of miles from home, staying in an apartment with my wife about an 8 minute drive from MD Anderson. We...

It’s time for me to get CAR-T. I am currently thousands of miles from home, stay...

john-doe

•3 years ago

30 Replies

Swimming: Leukemia survivor Ikee wins Olympic berth in relay

I thought I'll share - we won't all become Olympic winners in our lives, but that's definitely encouraging! Swimming star Rikako Ikee, who is recovering from...

I thought I'll share - we won't all become Olympic winners in our lives, but tha...

mantana

•3 years ago

2 Replies

Thanks to CLL Support volunteers and admins.

As I sit here on Easter Sunday having my morning coffee I realized it was time to thank (again) all those CLL volunteers and admins who keep this group so well...

As I sit here on Easter Sunday having my morning coffee I realized it was time t...

Awksom

•3 years ago

4 Replies

Pet Birds

Does anybody know if having pet birds our ok whilst on ibtrunib treatment because of diseases etc

Does anybody know if having pet birds our ok whilst on ibtrunib treatment becaus...

Duder

•3 years ago

9 Replies

Vaccine hesitancy doesn’t equal anti-vaxxer

Good article from The New Daily https://thenewdaily.com.au/news/coronavirus/2021/04/04/covid-vaccine-hesitancy/

Good article from The New Daily https://thenewdaily.com.au/news/coronavirus/202...

YelvertonDevon

•3 years ago

2 Replies

Early treatment for high risk CLL

ikahan

•3 years ago

10 Replies

CAR-NK and me

I came to MD Anderson to take part in the CAR-NK trial. I am a good candidate: in July my marrow involvement was 5%. Natural Killer cells don’t return to the...

I came to MD Anderson to take part in the CAR-NK trial. I am a good candidate: i...

john-doe

•3 years ago

24 Replies

New CLL patient having mild sweats on n off

First time post, this website looks helpful?!... so giving it a try to read (n post!) fellow CLLers thoughts and questions and especially the replies to learn...

First time post, this website looks helpful?!... so giving it a try to read (n p...

Pin57

•3 years ago

15 Replies

Is hair loss side effect of acalabrutnib?

Acalabrutnib and hair loss?

Mackiec1108

•3 years ago

8 Replies

AZ clots and platelets

Morning. First off I’m very happy to have received the AZ Covid vaccine but I wondered if people have come across greater clarification of the tiny number...

Morning. First off I’m very happy to have received the AZ Covid vaccine but I wo...

Ptcad

•3 years ago

8 Replies

Infection

Crazy question.....but how do we know if we have an infection if people with CLL already have high WBC normally?

Crazy question.....but how do we know if we have an infection if people with CLL...

Tracibfine

•3 years ago

26 Replies

B-PLL/DLBCL

Hi Everyone, My dad was on obinutuzumab/venetoclax combination first-line treatment for CLL with aggressive features. The CLL is out of his blood, but lymphoma...

Hi Everyone, My dad was on obinutuzumab/venetoclax combination first-line treatm...

Phs2385

•3 years ago

4 Replies

Ageing pet’s effect on my health

Our son has come home for a visit and is appalled at the smell of our old dog. She is incontinent and wears nappies or lies on sheets I change several times a...

Our son has come home for a visit and is appalled at the smell of our old dog. S...

Mandy56

•3 years ago

6 Replies

Vaccine Antibody Test Results

Second Pfizer Vaccine on Feb 12th, Semi quant spike covid antibody test on Mar 9th negative less then 1.0 Repeated spike quant test on Mar 29 ( LLS Registry...

Second Pfizer Vaccine on Feb 12th, Semi quant spike covid antibody test on Mar 9...

Davidcara

•3 years ago

12 Replies

CLL and Numb Chin Syndrome

Hi everyone. I am 40 year old male in the UK and was diagnosed with CLL in Feb 2019. I have been on w&w for the entire time. I have had no real symptoms with...

Hi everyone. I am 40 year old male in the UK and was diagnosed with CLL in Feb 2...

Devans81

•3 years ago

5 Replies

CLL Specialist

Hi. I am new to this group, and newly diagnosed. My CLL was a blaring red flag since 2017 and went undiagnosed until now (another story)......... But, I have...

Hi. I am new to this group, and newly diagnosed. My CLL was a blaring red flag s...

Tracibfine

•3 years ago

13 Replies

Do Vaccines Protect Healthy from Asymptomatic Infection/Transmission?

Do you think this article is saying these vaccines protect against asymptomatic Covid infection? This would be very important in protecting CLLers from...

Do you think this article is saying these vaccines protect against asymptomatic ...

Ibru

•3 years ago

2 Replies

Lancet paper: COVID-19 vaccines for patients with haematological conditions

This paper was published today in the Lancet. Not sure if it’s been posted elsewhere (I tried searching the forum) but thought people might find it...

This paper was published today in the Lancet. Not sure if it’s been posted elsew...

AnnHow

•3 years ago

8 Replies

drugs for control side effects of taking ibrotinib

drugs for control side effects of taking ibrotinib Hello friends, my doctor has prescribed the drug ibrotinib. What drugs are needed to control the side...

drugs for control side effects of taking ibrotinib Hello friends, my doctor has...

4199993299

•3 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2021

Public comments

Rare Vaccine Side Effects - Why it's so hard to InvestigateThem

Astrazeneca and ibrutinib

Chinese exploration of nationals for 98% IGHV gene identity cutoff

CLL with “normal” FISH

Replacement eye lenses while on w and w

Drs. Jennifer Brown and Mazyar Shadman as they discuss the importance of testing before CLL treatment + preparing for appointments

High deletion of 13q ??

What does IGHV3-33 mean?

I've just recently worked my way up to Venetoclax 400mg. I'm curious if anyone had similar side effects:

post-vaccination antibody test

Seeking CAR-T Advice

Swimming: Leukemia survivor Ikee wins Olympic berth in relay

Thanks to CLL Support volunteers and admins.

Pet Birds

Vaccine hesitancy doesn’t equal anti-vaxxer

Early treatment for high risk CLL

CAR-NK and me

New CLL patient having mild sweats on n off

Is hair loss side effect of acalabrutnib?

AZ clots and platelets

Infection

B-PLL/DLBCL

Ageing pet’s effect on my health

Vaccine Antibody Test Results

CLL and Numb Chin Syndrome

CLL Specialist

Do Vaccines Protect Healthy from Asymptomatic Infection/Transmission?

Lancet paper: COVID-19 vaccines for patients with haematological conditions

drugs for control side effects of taking ibrotinib

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