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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-

•9 hours ago

4 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

•15 hours ago

7 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

•16 hours ago

2 Replies

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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

•19 hours ago

15 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•22 hours ago

8 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

•1 day ago

20 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...

LeeBic7

•2 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

•2 days ago

18 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

•2 days ago

17 Replies

Reactions to COVID boosters

Hi, I've been getting the COVID boosters in the UK on a regular basis, but my reaction each time has gotten worse. With the one six months ago and the one last...

Hi, I've been getting the COVID boosters in the UK on a regular basis, but my re...

SAT_poet

•3 days ago

20 Replies

Great news from my MDAnderson doctor

I was originally diagnosed in May, 2011 and had a long 9 year watch and wait. Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic...

I was originally diagnosed in May, 2011 and had a long 9 year watch and wait. ...

DGG1931

•3 days ago

29 Replies

Blood results

Hi This is my latest blood results and I'm aware they have been rising consistently now for over a year as well as having skin papuals which indicate cll...

Hi This is my latest blood results and I'm aware they have been rising consisten...

cartwheels

•3 days ago

1 Reply

Extreme fatigue and low blood pressure

Hi just wondering if anyone who experiences hitting the wall or for no particular reason feels empty of energy has tried taking their own blood pressure ? I...

Hi just wondering if anyone who experiences hitting the wall or for no particula...

Notmuchenergy

•3 days ago

17 Replies

Root canal while on Acalabrutinib

I am having a root canal in two weeks, and I wonder if I need to stop Acalabrutinib for 3 days before the treatment? any experience with that?

I am having a root canal in two weeks, and I wonder if I need to stop Acalabruti...

RamOren

•3 days ago

5 Replies

tp53 mutation

Hi All, my dad has been diagnosed with CLL and has just had it confirmed that he has the TP53 mutation/deletion. He is stable at the moment and is currently on...

Hi All, my dad has been diagnosed with CLL and has just had it confirmed that he...

Fortheloveoffarming

•4 days ago

8 Replies

Bendamustine

Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab In 2021 I received only 1 cycle of Bendamustine (90) + Rituximab. No further...

Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab ...

dickcll

•4 days ago

7 Replies

Pemgarda

I’ve been offered the Pemgarda infusion but was told I was the only patient who requested it at my oncology office. Has anyone received it?

I’ve been offered the Pemgarda infusion but was told I was the only patient who ...

Cllinmaryland

•4 days ago

7 Replies

Act QUICKLY. L&LS Financial Assistance OPEN for CLL Patients

I applied and received award news in ten minutes....

Lily_Pad_Master

•4 days ago

Be the first to reply

Validation

I am positively buzzing after my two days at parliament in Wellington Aotearoa NZ as part of a summit focused on valuing life. I guess I had lost my...

I am positively buzzing after my two days at parliament in Wellington Aotearoa N...

Kiwidi

•5 days ago

2 Replies

i had my blood work done ,my wbc count is 28.0 and my lymphocyte count is 24.6 erd blood cell 4.53 platelet 106 ,8 weeks on brukinsa.

i was diognosed with 4th stage cll/sll ten years ago now i had my blood work done today my wbc count is 28.0 and my absolute lymphocyte count is 24.6, red...

i was diognosed with 4th stage cll/sll ten years ago now i had my blood work don...

ceciljr1958

•5 days ago

2 Replies

do I need the spring Covid shot?

I have had 7 covid shots since the start of Covid. On October 10 of 2023 I received the Moderna bivalent booster, as well as the flu shot and RSV shot. I...

I have had 7 covid shots since the start of Covid. On October 10 of 2023 I rece...

Claybuster

•5 days ago

9 Replies

Latest results questions

I need help, does anyone understand these results. I am currently on the Bruin 321 clinical trial and am on 3rd cycle of Pirtobrutinib. So far things are going...

I need help, does anyone understand these results. I am currently on the Bruin 3...

rcusher

•5 days ago

9 Replies

covid shot

hello , I just had another Covid shot, and each time I have had a large swollen lymph node I Under the arm where I had the injection, but this time I have two...

hello , I just had another Covid shot, and each time I have had a large swollen ...

Grandmajoanie

•6 days ago

9 Replies

Nattokinase

Does anyone take natto or vitamin k, and does it help with side fx of acalabrutinib? Thanks.

Does anyone take natto or vitamin k, and does it help with side fx of acalabruti...

Zabb

•6 days ago

13 Replies

Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group

Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase...

Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations...

AussieNeil

Administrator•6 days ago

8 Replies

CLL + nephrotic syndrome: furosemide problem

Hello, I'm here to share something with the community that may be important for those who have had nephrotic syndrome related to an infiltration of CLL in the...

Hello, I'm here to share something with the community that may be important for ...

BMFCDRW

•6 days ago

5 Replies

Reoccurring CLL

Hello Everyone I haven't been posted anything for a while. My father started venclyxto treatment last week he is doing ok at the moment he only complaining...

Hello Everyone I haven't been posted anything for a while. My father started ve...

agneshun

•7 days ago

4 Replies

CLL, Alcalabrutinib, Gout & Steroids

Hi I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episodes, some are more severe than others. The doctor prescribed a course of...

Hi I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episo...

Tomaljoe69

•7 days ago

38 Replies

Wendy

My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen...

My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years lat...

Fluxthecat10

•7 days ago

2 Replies

What is the longest remission that I can hope for?

I am wondering if there is any guide as to how long remission after modern treatments might last? For example V and O - are there any stats as to people who've...

I am wondering if there is any guide as to how long remission after modern treat...

Research123

•7 days ago

12 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

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

Reactions to COVID boosters

Great news from my MDAnderson doctor

Blood results

Extreme fatigue and low blood pressure

Root canal while on Acalabrutinib

tp53 mutation

Bendamustine

Pemgarda

Act QUICKLY. L&LS Financial Assistance OPEN for CLL Patients

Validation

i had my blood work done ,my wbc count is 28.0 and my lymphocyte count is 24.6 erd blood cell 4.53 platelet 106 ,8 weeks on brukinsa.

do I need the spring Covid shot?

Latest results questions

covid shot

Nattokinase

Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group

CLL + nephrotic syndrome: furosemide problem

Reoccurring CLL

CLL, Alcalabrutinib, Gout & Steroids

Wendy

What is the longest remission that I can hope for?

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