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Ibrutinib
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Muscle pain on Ibrutinib
Has anyone else experienced muscle pain and stiffness on
Ibrutinib
? I started it as frontline treatment back in October and have been sailing along without any problems. Once or twice when my water intake was not adequate I did get cramping.
Has anyone else experienced muscle pain and stiffness on
Ibrutinib
? I started it as frontline treatment back in October and have been sailing along without any problems. Once or twice when my water intake was not adequate I did get cramping.
kimiD
in
CLL Support
7 years ago
3 weeks in flair trial ......
not particularly concerned at the moment ......just wondered if it usually levels off after a while with the
ibrutinib
.... stewie
not particularly concerned at the moment ......just wondered if it usually levels off after a while with the
ibrutinib
.... stewie
stewie
in
CLL Support
7 years ago
Starting Ibrutinib plus Venetoclax Trial at MDA
From what I really know now I will be taking
Ibrutinib
for 4 months then keep taking
Ibrutinib
and dose escalate on the VEN for 5 weeks. I'm pretty sure I'll be taking both on this trial indefinitely but not totally sure. I live in Kansas so I will be doing a lot of traveling to MDA for 2 years.
From what I really know now I will be taking
Ibrutinib
for 4 months then keep taking
Ibrutinib
and dose escalate on the VEN for 5 weeks. I'm pretty sure I'll be taking both on this trial indefinitely but not totally sure. I live in Kansas so I will be doing a lot of traveling to MDA for 2 years.
lukejensen27
in
CLL Support
7 years ago
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Good News of my CLL
My clone that is resistant to
ibrutinib
had stopped its relentless growth after almost a two year climb. I am very grateful.
My clone that is resistant to
ibrutinib
had stopped its relentless growth after almost a two year climb. I am very grateful.
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Update for followers
In the five years previously through fcr bendamustine
ibrutinib
I never got below 40 percent. Thank you to prof gribben and the nurses. Thank you to all on this site who have chipped in with really important advice when needed! Including pointing out the trial I'm on.
In the five years previously through fcr bendamustine
ibrutinib
I never got below 40 percent. Thank you to prof gribben and the nurses. Thank you to all on this site who have chipped in with really important advice when needed! Including pointing out the trial I'm on.
Corin850
in
CLL Support
7 years ago
T cell prolymphocytic leukemia
Has anyone on this forum ever been treated with
Ibrutinib
for T cell prolymphocytic leukemia? If so were the results positive/
Has anyone on this forum ever been treated with
Ibrutinib
for T cell prolymphocytic leukemia? If so were the results positive/
Jince45
in
CLL Support
7 years ago
After abandoning FLAIR Limbo land
Came off
Ibrutinib
/Riutximab FLAIR trail almost 8 months ago due to bad side effects, and was warned 2 months ago that more treatment may soon be necessary. However most recent check up showed only slight rise in lymphocytes and all my other blood results remain normal. Consultant very positive.
Came off
Ibrutinib
/Riutximab FLAIR trail almost 8 months ago due to bad side effects, and was warned 2 months ago that more treatment may soon be necessary. However most recent check up showed only slight rise in lymphocytes and all my other blood results remain normal. Consultant very positive.
romarin
in
CLL Support
7 years ago
Ibrutinib + whatever helps not having side effects
My mother is about to start treatment with
Ibrutinib
, I couldn´t convince the hematologist to start directly with Acalmbrutinib because is not aprove by the FDA in frontline. Today we have a new study and find out that she has 17p deletion/p53 positive.
My mother is about to start treatment with
Ibrutinib
, I couldn´t convince the hematologist to start directly with Acalmbrutinib because is not aprove by the FDA in frontline. Today we have a new study and find out that she has 17p deletion/p53 positive.
nicolas_12
in
CLL Support
7 years ago
Key questions to ask your consultant
What sort of treatments would be open to me (e.g. new ones like many discussed on the list - I even forget the name of the front line drugs now, I almost said ibuprofen ;-) As I cannot remember the spelling I cut and paste them: Rituximab (Rituxan) -
Ibrutinib
(Imbruvica)giving away my secrets.
What sort of treatments would be open to me (e.g. new ones like many discussed on the list - I even forget the name of the front line drugs now, I almost said ibuprofen ;-) As I cannot remember the spelling I cut and paste them: Rituximab (Rituxan) -
Ibrutinib
(Imbruvica)giving away my secrets.
Davdow
in
CLL Support
7 years ago
Surveillance on PCYC-116-CA (Extension study RESONATE-2) MRD +ve
I still have around 18 months to go on
Ibrutinib
to complete my five years on the study. I sincerely hope that many others here are having similar positive outcomes. Best Wishes to all, Mike
I still have around 18 months to go on
Ibrutinib
to complete my five years on the study. I sincerely hope that many others here are having similar positive outcomes. Best Wishes to all, Mike
Mikey47
in
CLL Support
7 years ago
New to forum, hoping for advice.
He has the TP53 gene mutation, therefore, his treatment options are limited, he was lucky enough to be prescribed
Ibrutinib
and was on the full dose of 3 tablets a day and everything seemed to be moving in the right direction until the beginning of December.
He has the TP53 gene mutation, therefore, his treatment options are limited, he was lucky enough to be prescribed
Ibrutinib
and was on the full dose of 3 tablets a day and everything seemed to be moving in the right direction until the beginning of December.
Crafty-girl
in
CLL Support
7 years ago
How to manage sores and cuts on fingers with Ibrutinib? (Started treatment after seven years with SLL)
I have been taking imbruvica for four months for sll. First diagnosed in 2009. I feel much better and my wbc has gone down from 246,000 to 76,000. Dramatic change. Side effects - if anyone has experienced sores and cuts on your fingers (cuticle mostly) and same on my toes. Healing time is very slow
I have been taking imbruvica for four months for sll. First diagnosed in 2009. I feel much better and my wbc has gone down from 246,000 to 76,000. Dramatic change. Side effects - if anyone has experienced sores and cuts on your fingers (cuticle mostly) and same on my toes. Healing time is very slow
ellislm
in
CLL Support
7 years ago
Relapsed Mantle Cell Lymphoma--I'm new here!
I would love to hear from anyone who has MCL, especially those of you with relapsed MCL, and anyone who has had experience with
Ibrutinib
(Imbruvica). I still have a lot of life to live and am hoping that something will slow down the growth of my MCL until a cure is found!
I would love to hear from anyone who has MCL, especially those of you with relapsed MCL, and anyone who has had experience with
Ibrutinib
(Imbruvica). I still have a lot of life to live and am hoping that something will slow down the growth of my MCL until a cure is found!
Gail2050
in
Non Hodgkin's Lymphoma Friends
7 years ago
Ibrutinib interruption for surgery
Does anyone know if there have been any studies on the effect that interrupting
ibrutinib
for surgery has on progression free survival after the
ibrutinib
is resumed? john
Does anyone know if there have been any studies on the effect that interrupting
ibrutinib
for surgery has on progression free survival after the
ibrutinib
is resumed? john
johnl
in
CLL Support
7 years ago
Nonresponsivity to Rituxin
I would like to avoid having to do a full blown treatment for CLL (
Ibrutinib
etc). I have, TG, always felt well and would hate to start taking something that will reduce my sense of well being. I was wondering if genetic testing might identify a possible drug for me?? Thank you everyone.
I would like to avoid having to do a full blown treatment for CLL (
Ibrutinib
etc). I have, TG, always felt well and would hate to start taking something that will reduce my sense of well being. I was wondering if genetic testing might identify a possible drug for me?? Thank you everyone.
Ezjacobs
in
CLL Support
7 years ago
IBRUTINIB - for 21 months, now stopped
It's been a year or so since I last posted about my
Ibrutinib
progress. Here is my latest situation. After FCR failure, I was put on
Ibrutinib
. This did its work and I was on the miracle drug for 21 months.
It's been a year or so since I last posted about my
Ibrutinib
progress. Here is my latest situation. After FCR failure, I was put on
Ibrutinib
. This did its work and I was on the miracle drug for 21 months.
Haileybury
in
CLL Support
7 years ago
After Ibrutinib failure, lymphocytes up again. Maybe another trial with Idealisib
Now 8 months since I had to stop the FLAIR trial of
Ibrutinib
and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase.
Now 8 months since I had to stop the FLAIR trial of
Ibrutinib
and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase.
romarin
in
CLL Support
7 years ago
Long term Ibrutinib data:This deserves mentioning again 😃
http://www.onclive.com/conference-coverage/ash-2016/after-5-years-of-followup-
ibrutinib
-continues-to-impress-in-cllsll Jeff
http://www.onclive.com/conference-coverage/ash-2016/after-5-years-of-followup-
ibrutinib
-continues-to-impress-in-cllsll Jeff
Justasheet1
in
CLL Support
7 years ago
Ibrutinib cost/private insurance
Anyone with US based private insurance paying for
ibrutinib
? Can you say anything about the cost?
Anyone with US based private insurance paying for
ibrutinib
? Can you say anything about the cost?
YjbCLL
in
CLL Support
7 years ago
3 month into flair trial (ibrutinib & retuxinab)
Hi everyone and happy new year! I thought I should post an update as I am now half way through my infusions of retuxinab on the flair trial programme. I take three ibutinib tabs every day and have a retuxinab infusion every four weeks. Six infusions in total. Everything was going well with very mild
Hi everyone and happy new year! I thought I should post an update as I am now half way through my infusions of retuxinab on the flair trial programme. I take three ibutinib tabs every day and have a retuxinab infusion every four weeks. Six infusions in total. Everything was going well with very mild
Deeso
in
CLL Support
7 years ago
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