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CLL Support

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Warts and all

I consider myself fortunate, now in year 12 on BTK inhibitors with low, but adequate blood counts and a reasonably good quality of life that includes travel...

I consider myself fortunate, now in year 12 on BTK inhibitors with low, but adeq...

Bluesinthenight

•8 hours ago

5 Replies

Cll AND Multiple Myeloma

Unfortunately my husband has both cll and multiple myeloma! He was diagnosed with cll 25years ago(aged 50)and has had various treatments each time he...

Unfortunately my husband has both cll and multiple myeloma! He was diagnosed wi...

Retiredlady

•17 hours ago

2 Replies

CLL Physical Activity and Quality of Life Questionnaire

Hello, For those who don’t know me, I am Ellie Miles, a PhD student under Dr David Bartlett, investigating CLL/SLL-derived premature frailty and aiming to...

Hello, For those who don’t know me, I am Ellie Miles, a PhD student under Dr Da...

Ellieemiles

•17 hours ago

2 Replies

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a diagnosis at last

saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t...

saw consultant yesterday I have almost completed diagnosis few more tests to com...

Hilo13

•23 hours ago

10 Replies

Any insight as to CAUSES of cll besides 'age'or 'genetics'?

I think I once seen this asked. But, apparently, not much insight besides 'age' on causes of cll. Some have suggested that it can be certain medicines ; blood...

I think I once seen this asked. But, apparently, not much insight besides 'age' ...

Hidden

•1 day ago

31 Replies

headache

I have been having been headaches for while now and my Lymphocyte count, blood 3.43 (High) and been like that for 6 months I worried. Is this something to be...

I have been having been headaches for while now and my Lymphocyte count, blood 3...

Shazna

•2 days ago

4 Replies

ALC doubling time

I was diagnosed with CLL/SLL Jan 2023.i completed O and V March 8 th of this year. My most recent labs show that my ALC went from 2.45 in March to 4.8 with...

I was diagnosed with CLL/SLL Jan 2023.i completed O and V March 8 th of this yea...

Shangonmom

•2 days ago

11 Replies

Experiences of cardiovascular side effects of medications for CLL

Gradually heading towards the end of W&W so searching for best advice possible. I am a very keen exerciser and would like to continue exercise while on...

Gradually heading towards the end of W&W so searching for best advice possible. ...

Identiy

•2 days ago

8 Replies

Hopeful NX-5948 will work

I looked at the company's website (Nurix) & it explained their new approach, ie terminating BTK rather than inhibiting it. Hope the trials reveal something...

I looked at the company's website (Nurix) & it explained their new approach, ie ...

CSP2019

•2 days ago

1 Reply

"Natural hack" to boost immune system

Hello everyone, I've gotten such helpful answers in this group, I want to add my "hack" in case it helps someone. So I've a tendency to mouth infections (&...

Hello everyone, I've gotten such helpful answers in this group, I want to add m...

LadyLuckyLuna

•3 days ago

2 Replies

lymph node on acala

Hello all, I’ve been on acalabrutinib for 4.5 years now and have had smooth sailing. In the last week, I’ve experienced some jaw pain and just discovered a...

Hello all, I’ve been on acalabrutinib for 4.5 years now and have had smooth sail...

rggerlac

•3 days ago

3 Replies

Long, but much needed post about calquence vs venetoclax

Hello everyone. Had some questions about calquence and venetoclax. Reading through each of their official pages about side effects. The side effects are scary...

Hello everyone. Had some questions about calquence and venetoclax. Reading throu...

Hidden

•3 days ago

24 Replies

husband hijacked account 😂

hi all, sorry for the message that was posted from my account introducing myself, it wasn’t me, it was my husband who somehow hijacked my account. He’s really...

hi all, sorry for the message that was posted from my account introducing myself...

Artycrafter

•3 days ago

12 Replies

Introduction

Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this...

Hi I decided to join after my wife recommended this truly excellent resource ...

bodgit

•3 days ago

4 Replies

Introduction

Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this...

Hi I decided to join after my wife recommended this truly excellent resource an...

Artycrafter

•4 days ago

9 Replies

What to do? a very enlarged spleen & very little money for treatment

Hello everyone, I was diagnosed in 2019 with CLL & told to watch & wait. Blood counts not too bad. My symptoms till recently: a tendency to infections...

Hello everyone, I was diagnosed in 2019 with CLL & told to watch & wait. Blood ...

LadyLuckyLuna

•4 days ago

20 Replies

shall CLL patient do Covid vaccination?

shall CLL patients do covid 19 vaccine?

al444

•4 days ago

6 Replies

My Father died

Its been 23 days since i asked here About CLL i got a lot of optimistic response and answers After my father had TP53 mutation with 17p Deletion i was told...

Its been 23 days since i asked here About CLL i got a lot of optimistic respons...

Ornate2001

•4 days ago

31 Replies

Is it the time for initial treatment?

As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form....

As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are ...

Sagarcanada

•4 days ago

20 Replies

Anyone have rales/crackles in their lungs with no other symptoms ???

Good morning to everyone .. it is so nice to have the beautiful spring flowers everywhere and the warm sunshine .. I am doing well on my O&V treatment but I...

Good morning to everyone .. it is so nice to have the beautiful spring flowers e...

craterlake

•4 days ago

9 Replies

Sudden fall in platelets was tooth related

Two months ago I had a sudden fall in platelets, out of the blue I thought. My since long ITP trombocytopenia had been quite stable in platelets for quite a...

Two months ago I had a sudden fall in platelets, out of the blue I thought. My s...

Accordion

•5 days ago

10 Replies

Sciatica

I posted a few months re joint and muscle pain wondering if it could be connected to being on Acalabrutinib. The first pain was in left leg and I think...

I posted a few months re joint and muscle pain wondering if it could be connect...

Westie11-

•6 days ago

19 Replies

abbreviations what do they stand for

Hi my husband has just been diagnosed CLL. So as in a previous post of mine, very naive in loads of things and we have lots to learn. very confused with all...

Hi my husband has just been diagnosed CLL. So as in a previous post of mine, ver...

Artycrafter

•6 days ago

12 Replies

Polymyalgia

Hi Friends Just a update since being in remission in Dec 2023.I have continued to struggle with Arthritis all over and muscle pain. Over the last 3 months...

Hi Friends Just a update since being in remission in Dec 2023.I have continued...

Stavrou1

•6 days ago

19 Replies

Confused

Hi everyone. Bit confused. I've had CLL for 15 years,never needed treatment. See hematologist every 4 months. The last few times he's mentioned maybe treatment...

Hi everyone. Bit confused. I've had CLL for 15 years,never needed treatment. See...

welshlady52

•6 days ago

69 Replies

Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?

Regular readers will have often heard that around 30% of those diagnosed with CLL never need treatment. So how is it determined whether you fall into that...

Regular readers will have often heard that around 30% of those diagnosed with CL...

AussieNeil

Administrator•6 days ago

18 Replies

Second Treatment -Feeling scared

My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he...

My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarg...

Sanders9

•7 days ago

24 Replies

Very worried about Mom

Hello everyone - wish you all a healthy path.My Mother was admitted to the hospital Monday morning and we found out she had urinary infection that went to her...

Hello everyone - wish you all a healthy path.My Mother was admitted to the hospi...

Hidden

•7 days ago

13 Replies

Stomach heavy is due to a swollen spleen?

My wife has had CLL since 2020 and is still in the W&W stage. For the past few months, she has complained that her stomach is becoming heavy, implying that it...

My wife has had CLL since 2020 and is still in the W&W stage. For the past few ...

Sagarcanada

•7 days ago

28 Replies

low white cells

I am half way through my O&V treatment. I have finished my infusions am I am just on venetoclax. The problem is I am on a max dose of 200g per day rather...

I am half way through my O&V treatment. I have finished my infusions am I am ju...

Farleytiff

•8 days ago

19 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

Warts and all

Cll AND Multiple Myeloma

CLL Physical Activity and Quality of Life Questionnaire

a diagnosis at last

Any insight as to CAUSES of cll besides 'age'or 'genetics'?

headache

ALC doubling time

Experiences of cardiovascular side effects of medications for CLL

Hopeful NX-5948 will work

"Natural hack" to boost immune system

lymph node on acala

Long, but much needed post about calquence vs venetoclax

husband hijacked account 😂

Introduction

Introduction

What to do? a very enlarged spleen & very little money for treatment

shall CLL patient do Covid vaccination?

My Father died

Is it the time for initial treatment?

Anyone have rales/crackles in their lungs with no other symptoms ???

Sudden fall in platelets was tooth related

Sciatica

abbreviations what do they stand for

Polymyalgia

Confused

Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?

Second Treatment -Feeling scared

Very worried about Mom

Stomach heavy is due to a swollen spleen?

low white cells

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