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CLL Support

22,532 members • 38,709 posts

Ibrutinib VS V&O

Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ago and all is well so far thank goodness. What I’m wondering is: it seems from...

Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ...

GettinThruIt

•1 day ago

35 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

•20 days ago

97 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

•12 days ago

73 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

•7 days ago

51 Replies

New DX

I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I...

I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 201...

pkpayne

•18 hours ago

16 Replies

Infections like pneumonia and sinus. Lessons learned.

I’m saddened and sorry for all those who have been suffering from pneumonia and respiratory infections. Been posted of late. As a physician who knows better,...

I’m saddened and sorry for all those who have been suffering from pneumonia and ...

skipro

•3 hours ago

7 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...

Hidden

•29 days ago

62 Replies

A recent consultation with a CLL specialist, and confirmation of genetic markers

My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was...

My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also p...

Sagarcanada

•1 day ago

12 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

•6 days ago

25 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

•10 days ago

31 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

•23 days ago

44 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

•17 days ago

38 Replies

Bone loss, due to any CLL treatments?

This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the...

This is not strictly related to CLL. My sister has had chemotherapy for breast...

MistyMountainHop

•1 day ago

11 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

•7 days ago

22 Replies

V&R Treatment

I live in Canada and I am on my 7 month's treatment. Last week, I was told by my oncologist that my treatment ended. I was overjoyed. But yesterday he told me...

I live in Canada and I am on my 7 month's treatment. Last week, I was told by m...

unairdefamille

•4 days ago

18 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

•14 days ago

31 Replies

Bloods Stable.

I'm writing to convey my relief after finding out that my 6 monthly bloods are stable.I was naturally quite anxious about his my blood levels were going to be...

I'm writing to convey my relief after finding out that my 6 monthly bloods are s...

Maya2007

•5 hours ago

4 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

•18 days ago

34 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

•9 days ago

24 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

•13 days ago

28 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

•1 month ago

44 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

•1 month ago

42 Replies

Acalabrutinib and Blocked Ears

I started Acala two weeks ago and have had some side effects including bruises, blood blisters in the mouth and headaches. Yesterday I noticed that my ears...

I started Acala two weeks ago and have had some side effects including bruises, ...

ScruffyDuck

•1 day ago

9 Replies

Burning tongue and metallic taste .

I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and...

I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax n...

GIDI

•1 day ago

9 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

•12 days ago

24 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

•10 days ago

21 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

•10 days ago

20 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

•25 days ago

31 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

•12 days ago

21 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

•5 days ago

14 Replies

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