CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

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

•7 days ago

69 Replies

Devastated

I went to my first three month blood test today. I am at Rai 0. I feel great. My WBC and Lymphocytes doubled in 3 months. I am starting V and O on Monday. I am...

I went to my first three month blood test today. I am at Rai 0. I feel great. My...

Hidden

•15 days ago

97 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

•2 days ago

36 Replies

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

•1 day ago

19 Replies

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

•2 days ago

20 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

•5 days ago

31 Replies

CLL questions

Are you living a normal life? Are you happy? Do you live in fear of what will be the next deadly disease?

Are you living a normal life? Are you happy? Do you live in fear of what will be...

Crablegs

•24 days ago

62 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

•4 days ago

24 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

•12 days ago

38 Replies

Can eye of newt and toe of frog help cure my cll?

Double, double toil and trouble; Fire burn and caldron bubble. Fillet of a fenny snake, In the caldron boil and bake; Eye of...

Double, double toil and trouble; Fire burn and caldron bubble. Fillet of a fen...

cajunjeff

•18 days ago

44 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

•9 days ago

31 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

•8 days ago

28 Replies

Almost to the point of despair. Sorry for this.

Hello, everyone. Today's post is more in the form of despair because, frankly, that's how I feel. I'm only a few days away from starting the Obinutuzumab...

Hello, everyone. Today's post is more in the form of despair because, frankly, t...

BMFCDRW

•1 month ago

56 Replies

Is Septrin (Co-trimoxazole) a lifelong medication

Greetings. Septrin was part of the medication I started at the commencement of Ibrutinib. I take 1 tab 960 mg evey alternate days. Have been on it for about 6...

Greetings. Septrin was part of the medication I started at the commencement of I...

Oldscores1

•13 days ago

34 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

•5 days ago

20 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

•5 days ago

20 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

COVID diagnosis

Just been on a 300 mile bike ride and returned with COVID. Don't feel too bad but should I contact consultant. I have had a vaccination about 3 weeks ago.

Just been on a 300 mile bike ride and returned with COVID. Don't feel too bad bu...

Guinness4822

•12 hours ago

6 Replies

Joy in response to frustrating news

I had a bone marrow biopsy to see if I was at uMRD and could come off my second CLL treatment in 5 years. The tests were sent to the wrong location and after...

I had a bone marrow biopsy to see if I was at uMRD and could come off my second ...

skipro

•26 days ago

42 Replies

Enlarged spleen CLL stage 0

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges now. My spleen has become very enlarged over the last 6 months so my...

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges ...

Redkatt

•29 days ago

41 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

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

•7 days ago

19 Replies

Great News on MSNBC

https://www.msn.com/en-my/health/other/joe-was-at-death-s-door-until-pill-beat-his-cancer-in-six-months/ar-AA1nn0Mz

https://www.msn.com/en-my/health/other/joe-was-at-death-s-door-until-pill-beat-h...

Hidden

•20 days ago

31 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

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•7 days ago

18 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

•8 days ago

20 Replies

anemia

I have been on watch and wait for three years, I mostly had SLL, with alot of lymph node involvement. The last couple of months my hemoglobin and hematocrit...

I have been on watch and wait for three years, I mostly had SLL, with alot of ly...

Gino23

•14 days ago

25 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

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

•4 days ago

12 Replies

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

•9 days ago

17 Replies

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