Search
Search
About
Log in
Join
Experiences with
Ibrutinib
Posts
Communities
1,974 public posts
Filter results
Petechia
I have been treated with
Ibrutinib
for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this.
I have been treated with
Ibrutinib
for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this.
Glasstop
in
CLL Support
7 months ago
Treatment
I have been recommended
Ibrutinib
and Venetoclax on the first drug tommorow.
I have been recommended
Ibrutinib
and Venetoclax on the first drug tommorow.
Guinness4822
in
CLL Support
9 months ago
Venatoclax mono therapy
Then took
ibrutinib
and a holiday after a half year, with no progression.
Then took
ibrutinib
and a holiday after a half year, with no progression.
onu1tadi2
in
CLL Support
5 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
CLL and Sauna
I’m a CLL patient on
Ibrutinib
for almost 6 years. My husband is a Sauna fan, he is even making one at home and he’s always asking me to go … i’m not sure if i can do it!! Anyone here does it? Or knows if possible or dangerous? Thanks for help
I’m a CLL patient on
Ibrutinib
for almost 6 years. My husband is a Sauna fan, he is even making one at home and he’s always asking me to go … i’m not sure if i can do it!! Anyone here does it? Or knows if possible or dangerous? Thanks for help
Deta
in
CLL Support
8 months ago
Diverticulitis
I am diagonised CLL and have been treated with
Ibrutinib
since 2017, I have recently developed diverticulitis and was thinking of taking a Probiotic but wondered if this is safe for CLL patients.
I am diagonised CLL and have been treated with
Ibrutinib
since 2017, I have recently developed diverticulitis and was thinking of taking a Probiotic but wondered if this is safe for CLL patients.
Chamberlayne
in
CLL Support
9 months ago
Heart Issues and Venclexta?
Over the past 5, almost 6 years, he’s been treated with
Ibrutinib
, Venclexta, and Acalabrutinib. He’s had to discontinue all 3 because he couldn’t tolerate them for long.
Over the past 5, almost 6 years, he’s been treated with
Ibrutinib
, Venclexta, and Acalabrutinib. He’s had to discontinue all 3 because he couldn’t tolerate them for long.
KKwtx
in
CLL Support
8 months ago
Hi.good to be back
I started getting headaches which were getting progressively worse in April and was admitted to UCLH haematology ward and started on treatment
ibrutinib
& Venetaclax the pain got so intense that I had a mini stroke , after a MRI they decided to operate and found a fungus eating into my brain ,although
I started getting headaches which were getting progressively worse in April and was admitted to UCLH haematology ward and started on treatment
ibrutinib
& Venetaclax the pain got so intense that I had a mini stroke , after a MRI they decided to operate and found a fungus eating into my brain ,although
9876
in
CLL Support
7 months ago
Rituximab- my experience.
Now on cycles of rituximab + daily
Ibrutinib
About 2 months on, I'm finally starting to feel some benefit, with only mild side effects now I'm on a lowered dosage of
Ibrutinib
. Feeling stronger, walking is improving..
Now on cycles of rituximab + daily
Ibrutinib
About 2 months on, I'm finally starting to feel some benefit, with only mild side effects now I'm on a lowered dosage of
Ibrutinib
. Feeling stronger, walking is improving..
Hidden
in
CLL Support
9 months ago
Ibrutinib bone , joint pain
Has anyone else experienced this after many years of being on
ibrutinib
and I appreciate that of course I may now be failing
ibrutinib
as my numbers suggest and consultant aware. Obviously still taking
ibrutinib
daily although my bloods are now being checked every 6 weeks as opposed to 12 .
Has anyone else experienced this after many years of being on
ibrutinib
and I appreciate that of course I may now be failing
ibrutinib
as my numbers suggest and consultant aware. Obviously still taking
ibrutinib
daily although my bloods are now being checked every 6 weeks as opposed to 12 .
cartwheels
in
CLL Support
10 months ago
Lymphocytic infiltration
At my last heamotolgy apparently a few weeks ago he discussed that I have been on
Ibrutinib
a long time 6.5 years and all year my numbers are rising now over 11 and wants to keep a close eye on me and talked of a possible trial I could go on but gave no details as he said there are other things to look
At my last heamotolgy apparently a few weeks ago he discussed that I have been on
Ibrutinib
a long time 6.5 years and all year my numbers are rising now over 11 and wants to keep a close eye on me and talked of a possible trial I could go on but gave no details as he said there are other things to look
cartwheels
in
CLL Support
5 months ago
moving on to next treatment-considering Nurex
Have had multiple treatments FCR,Bent&R,
Ibrutinib
and most recently clin trial Loxo 305 (40 months) numbers are changing along with resistance (mut PLg2). I know several members are on degrader (nurex) trial and would appreciate their thoughts or other members on this clinical trial.
Have had multiple treatments FCR,Bent&R,
Ibrutinib
and most recently clin trial Loxo 305 (40 months) numbers are changing along with resistance (mut PLg2). I know several members are on degrader (nurex) trial and would appreciate their thoughts or other members on this clinical trial.
Osprey69
in
CLL Support
8 months ago
How Long for BTK Inhibitor to Reduce WBC.
Ibrutinib
, acalabrutinib, zanabrutinib) for their WBC to be down to normal range again? I'm very watchful for signs of encephalitis, but I'll feel more comfortable once my WBC is within the normal range again.
Ibrutinib
, acalabrutinib, zanabrutinib) for their WBC to be down to normal range again? I'm very watchful for signs of encephalitis, but I'll feel more comfortable once my WBC is within the normal range again.
MyCLLJourney
in
CLL Support
8 months ago
Struggling Financially with Leukaemia?
In October 2023 it was decided by my MDT (Multi Disciplinary Team) and Haematologist that I should start chemotherapy with
Ibrutinib
& Venetoclax and he said I would not be able to work whilst on treatment, I am a young and relatively fit 75, 76 next week.
In October 2023 it was decided by my MDT (Multi Disciplinary Team) and Haematologist that I should start chemotherapy with
Ibrutinib
& Venetoclax and he said I would not be able to work whilst on treatment, I am a young and relatively fit 75, 76 next week.
clifflee
in
CLL Support
5 days ago
How Long for BTK inhibitor to Lower WBC?
Ibrutinib
, acalabrutinib, zanabrutinib) for their WBC to be down to normal range again? I'm very watchful for signs of encephalitis, but I'll feel more comfortable once my WBC is within the normal range again.
Ibrutinib
, acalabrutinib, zanabrutinib) for their WBC to be down to normal range again? I'm very watchful for signs of encephalitis, but I'll feel more comfortable once my WBC is within the normal range again.
MyCLLJourney
in
NRAS
8 months ago
Ibrutinib and Hepatitis B
Also what other medications did you take with
Ibrutinib
like antibiotics etc and what were the side effects of
Ibrutinib
. Thanks!
Also what other medications did you take with
Ibrutinib
like antibiotics etc and what were the side effects of
Ibrutinib
. Thanks!
Dianaaaaaaaa
in
CLL Support
11 months ago
Windermere
Then started
ibrutinib
and still on it, how long is it likely to keep me in remission.
Then started
ibrutinib
and still on it, how long is it likely to keep me in remission.
Windemere
in
CLL Support
10 months ago
Does Untreated Asymptomatic CLL Carry Risks? …early treatment does not yet improve survival of certain patients, from 2 year study results.
https://powerfulpatients.org/2023/08/07/does-untreated-asymptomatic-cll-carry-risks/ https://vimeo.com/851522316 [i]And it was the CLL12 trial that was just presented at the European Hematology Association meeting that compared
ibrutinib
(Imbruvica) to a placebo in a blinded trial in higher risk CLL
https://powerfulpatients.org/2023/08/07/does-untreated-asymptomatic-cll-carry-risks/ https://vimeo.com/851522316 [i]And it was the CLL12 trial that was just presented at the European Hematology Association meeting that compared
ibrutinib
(Imbruvica) to a placebo in a blinded trial in higher risk CLL
lankisterguy
Volunteer
in
CLL Support
9 months ago
Serum gamma-glutamyl transferase level
Any incite to the meaning of this test in respect of someone who has been on
Ibrutinib
for the last 6 years? On no other medications, non smoker and no alcohol.
Any incite to the meaning of this test in respect of someone who has been on
Ibrutinib
for the last 6 years? On no other medications, non smoker and no alcohol.
RobertCLL
in
CLL Support
9 months ago
mild struggles
Various treatments. 2014
ibrutinib
. 2016 Venetoclax and obinutuzumab on trial. It worked. 2021 CLL back in bone marrow. Now starting to grow slowly. Haemaglobin only 13. I like more. I’m 54. Seem to constantly have colds. Chronic and recurrent sinusitis. Bowel trouble too.
Various treatments. 2014
ibrutinib
. 2016 Venetoclax and obinutuzumab on trial. It worked. 2021 CLL back in bone marrow. Now starting to grow slowly. Haemaglobin only 13. I like more. I’m 54. Seem to constantly have colds. Chronic and recurrent sinusitis. Bowel trouble too.
Corin850
in
CLL Support
9 months ago
windemere
What is the average length of time
ibrutinib
is effective for CLL I have been on it for 5 years.
What is the average length of time
ibrutinib
is effective for CLL I have been on it for 5 years.
Windemere
in
CLL Support
11 months ago
1
...
4
5
6
...
99
Next page
10
20
30
40
50
60
70
80
90
Filter results
Clear filters
Posted in
All communities
CLL Support
1885 results
CLL America Support
29 results
Non Hodgkin's Lymphoma Friends
29 results
View top 10 communities
Sort by
Most Relevant
Newest