Posts - CLL Support | HealthUnlocked

CLL Support

22,987 members • 39,473 posts

All posts for February 2022

Pneumonia Vaccines : How many kinds of pneumonia vaccines are there? (CLL )

I received a lot of responses to my recent pnuemonia susceptability question. Now I think there may be more vaccines for pnuemonia than the two pneumovaccines...

I received a lot of responses to my recent pnuemonia susceptability question. N...

humaniquarian

•3 years ago

8 Replies

'Watch and Wait' - an anxiety provoking label??

Hi, I'm fairly new to all this but can completely understand the anxiety that this disease causes - I honestly can't help thinking that the term 'watch and...

Hi, I'm fairly new to all this but can completely understand the anxiety that th...

Dyzzie22

•3 years ago

27 Replies

Evusheld and booster and IVIG

Just got the Evusheld injections. The fact sheet indicates that one should wait two weeks after a covid booster before getting Evusheld, but have been unable...

Just got the Evusheld injections. The fact sheet indicates that one should wait ...

Flyman

•3 years ago

15 Replies

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CLL experience

I was diagnosed with CLL in September 2015 - started on Imbruvica in January 2016 - after 2 1/2 years it no longer was effective - started on Venclexta for 2...

I was diagnosed with CLL in September 2015 - started on Imbruvica in January 201...

soapstone

•3 years ago

10 Replies

Joint pain with CLL?

I have CLL and have been on W&W for five years. Suddenly a few weeks ago I developed severe joint pain in my hands, shoulders, elbows, and knees. Been taking...

I have CLL and have been on W&W for five years. Suddenly a few weeks ago I devel...

Mwagner

•3 years ago

6 Replies

Important SARS-CoV-2 and Covid-19 information for Chronic Lymphocytic Leukaemia/CLL patients

This post, prepared in collaboration with AussieNeil , draws together some earlier posts relating to SARS-CoV-2 infection and CLL. COVID-19 RISK FOR...

This post, prepared in collaboration with AussieNeil , draws together so...

CLLerinOz

Administrator•3 years ago

93 Replies

Why is pneumonia so often fatal to CLL patients?

Why is pneumonia so often a cause of death among CLL patients? Wondering today, for many reasons. In part because I was out in extremely cold weather for a...

Why is pneumonia so often a cause of death among CLL patients? Wondering today,...

humaniquarian

•3 years ago

28 Replies

T Cell Experimental Trials 2010 re CLL

Hi All, I have just read an article by Dr Michael Moses, in, Saturday's Dail Mail, re the above trials. It invlolved 3 CLL patients, who had their, T Cell's...

Hi All, I have just read an article by Dr Michael Moses, in, Saturday's Dail Ma...

Vindicatrix

•3 years ago

4 Replies

10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy

I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know...

I rarely cross post to Patient Power but today there is a story by a fellow CLL ...

lankisterguy

Volunteer•3 years ago

17 Replies

Nitric Oxide Nasal Spray (NONS) ... is this all it is cracked up to be?

Dear All, My colleague in India sent me this:...

Me2AsWell

•3 years ago

11 Replies

BTK inhibitor challenges by Dr. Nicole Lamanna

Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for...

Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https:...

lankisterguy

Volunteer•3 years ago

30 Replies

Cashing in life insurance and pensions

I have been diagnosed with cll/sll for 4 years now. Chemotherapy was not successful and now on 2 years of venetoclax and Rituximab in the UK. Has anyone been...

I have been diagnosed with cll/sll for 4 years now. Chemotherapy was not succes...

bettyba

•3 years ago

20 Replies

Looking for recommendations for holiday insurance companies.

I am 78 years old male, with CLL, going on holiday to Greece for a fortnights holiday this June. Any recommendations re travel insurance companies?

I am 78 years old male, with CLL, going on holiday to Greece for a fortnights ho...

THeyaffler

•3 years ago

2 Replies

CLL Fatigue

I was diagnosed as a result of my suffering extreme tiredness. It too well over a year to get someone to investigate the possibilities of the tiredness just...

I was diagnosed as a result of my suffering extreme tiredness. It too well over ...

GD-K

•3 years ago

5 Replies

STARTING 4th CYCLE OF NX-2127 TRIAL

Here's an update from my newest clinical trial, Nurex-2127. This first phase is the dose finding part. I started on 300mg, the max amount at the time. Things...

Here's an update from my newest clinical trial, Nurex-2127. This first phase is...

steve5441

•3 years ago

4 Replies

Joint pain on Ibrutinib

Hi, Does anyone else get strange pains near joints, from this medicine?

WMwife

•3 years ago

31 Replies

The UK decides to let it rip ... what about us?

So now that the British Prime Minister (photo) is throwing ALL caution to the winds where does it leave those of us who are immunocompromised? What should we...

So now that the British Prime Minister (photo) is throwing ALL caution to the wi...

Me2AsWell

•3 years ago

44 Replies

46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?

Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast...

Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2...

Flitzebogen

•3 years ago

17 Replies

ANYONE WITH LOW BLOOD PRESSURE ISSUES WHILE TAKING ACALABRUTINIB?

I started treatment with Acalabrutinib June 2020. During first 2 months my only side effect was lightheadedness due to low Blood Pressure (BP), especially...

I started treatment with Acalabrutinib June 2020. During first 2 months my only...

CADreamer

•3 years ago

24 Replies

The results of my skin problems

Hi everyone since my last post about the skin problems , the biopsy had revealed it is from CLL and as a result my appointment has been brought forward and had...

Hi everyone since my last post about the skin problems , the biopsy had revealed...

Altindal22

•3 years ago

44 Replies

Acalabrutinib

Good morning folks. My consultant, Dr Munro rang yesterday. All good, I had had a CT scan a few weeks ago to check progress of lymph nodes and spleen. She said...

Good morning folks. My consultant, Dr Munro rang yesterday. All good, I had had ...

kitchengardener2

•3 years ago

7 Replies

Travel Insurance

I have just been refused travel insurance to cover future holidays in Europe by my existing provider in the UK because of my CLL (watch and wait). Does anyone...

I have just been refused travel insurance to cover future holidays in Europe by...

Happygarden

•3 years ago

41 Replies

USA Today article - A cure for CLL?

I'm on watch and wait now for 4 years.. saw this article in USA today - thought it was worth passing on.. Here's the link.....

I'm on watch and wait now for 4 years.. saw this article in USA today - thought ...

secondwind

•3 years ago

1 Reply

I cannot find clear explanation of the meaning of a 71 on antibodies test result….yet it is listed as ‘high’? can someone tell me? Thanks!

Can anyone tell me what an antibodies test result of 71 means? Quest rated 71 as high??

Can anyone tell me what an antibodies test result of 71 means? Quest rated 71 as...

ChattahoocheeBoy

•3 years ago

18 Replies

Lymph nodes

My husband was diagnosed with CLL 5 year's ago and been in remission for nearly 4 years,but since Covid started only been able to have phone calls with his...

My husband was diagnosed with CLL 5 year's ago and been in remission for nearly ...

BayfieldAnnette

•3 years ago

10 Replies

Evusheld

Has anyone had the AstraZenica Evusheld vaccine? If so, do you feel confident that you now have protection

Has anyone had the AstraZenica Evusheld vaccine? If so, do you feel confident t...

Lindaan

•3 years ago

17 Replies

Acalabrutinib Now Paid For by Ontario Under Its Exceptional Access Program

Just heard that Acalabrutinib (Calquence) is now covered through the Exceptional Access Program (EAP) of the Ontario Ministry of Health. The drug is provided...

Just heard that Acalabrutinib (Calquence) is now covered through the Exceptional...

Vizilo

•3 years ago

4 Replies

Finally Infected

Those that have read my posts know that I have taken much more risk than most of us would with CLL. I never got the first two versions of Covid, but as of a...

Those that have read my posts know that I have taken much more risk than most of...

wizzard166

•3 years ago

42 Replies

EVERYONES AN EXPERT

Will closely watch research coming out in the next few months that might help clarify the things everyone argues over.

Will closely watch research coming out in the next few months that might help cl...

lsutigers2018

•3 years ago

9 Replies

Statement from NHS digital acknowledging CLL error in PCR codes

“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with...

“Since we last spoke we have become aware of an issue where, due to human error,...

Bartlet

•3 years ago

20 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2022

Pneumonia Vaccines : How many kinds of pneumonia vaccines are there? (CLL )

'Watch and Wait' - an anxiety provoking label??

Evusheld and booster and IVIG

CLL experience

Joint pain with CLL?

Important SARS-CoV-2 and Covid-19 information for Chronic Lymphocytic Leukaemia/CLL patients

Why is pneumonia so often fatal to CLL patients?

T Cell Experimental Trials 2010 re CLL

10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy

Nitric Oxide Nasal Spray (NONS) ... is this all it is cracked up to be?

BTK inhibitor challenges by Dr. Nicole Lamanna

Cashing in life insurance and pensions

Looking for recommendations for holiday insurance companies.

CLL Fatigue

STARTING 4th CYCLE OF NX-2127 TRIAL

Joint pain on Ibrutinib

The UK decides to let it rip ... what about us?

46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?

ANYONE WITH LOW BLOOD PRESSURE ISSUES WHILE TAKING ACALABRUTINIB?

The results of my skin problems

Acalabrutinib

Travel Insurance

USA Today article - A cure for CLL?

I cannot find clear explanation of the meaning of a 71 on antibodies test result….yet it is listed as ‘high’? can someone tell me? Thanks!

Lymph nodes

Evusheld

Acalabrutinib Now Paid For by Ontario Under Its Exceptional Access Program

Finally Infected

EVERYONES AN EXPERT

Statement from NHS digital acknowledging CLL error in PCR codes

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