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Ibrutinib
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A CLL conundrum
I recently had to stop my
Ibrutinib
for three weeks while I was in hospital having surgery in the form of a total hip operation.
I recently had to stop my
Ibrutinib
for three weeks while I was in hospital having surgery in the form of a total hip operation.
Berrytog
in
CLL Support
9 years ago
Today, I joined CLLSA
I was in a 'wait and watch' situation until May 2015, when I became part of a Randomized Phase III Study of Bendamustine plus Rituximab versus
Ibrutinib
plus Rituximab versus
Ibrutinib
alone in untreated older patients [I will be 69 in mid-August] with CLL. I am on the
Ibrutinib
only arm.
I was in a 'wait and watch' situation until May 2015, when I became part of a Randomized Phase III Study of Bendamustine plus Rituximab versus
Ibrutinib
plus Rituximab versus
Ibrutinib
alone in untreated older patients [I will be 69 in mid-August] with CLL. I am on the
Ibrutinib
only arm.
lumdor
in
CLL Support
9 years ago
Ibrutinib forever??
Mikey 47 stopped taking
Ibrutinib
after going into remission.. I have been on
Ibrutinib
for 3 years, am in full remission and I am told to stay on it forever. Anyone have thoughts on this??
Mikey 47 stopped taking
Ibrutinib
after going into remission.. I have been on
Ibrutinib
for 3 years, am in full remission and I am told to stay on it forever. Anyone have thoughts on this??
fish61
in
CLL Support
9 years ago
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Professor Hallek on what Trial Design might give us Limited Duration Low Toxicity Therapies that offer Long term Disease Control
He has realistic concerns about prospect of lifelong therapies and points out some of the unpleasant truths about the limitations of treatments with signal blockers such as
ibrutinib
or idelalisib.
He has realistic concerns about prospect of lifelong therapies and points out some of the unpleasant truths about the limitations of treatments with signal blockers such as
ibrutinib
or idelalisib.
bkoffman
CLL CURE Hero
in
CLL Support
9 years ago
ibrutinib or wait?
I have finished 5 cycles of F/R.This is my second time around with same treatment,The first time having had 5 cycles in 2009 ,one year after diagnosis.My hem/onc dr.has just told me I may be elegible for ibrutinab,but offer from drug company ends end of June.My Dr. doesn.'t know when it will be cost
I have finished 5 cycles of F/R.This is my second time around with same treatment,The first time having had 5 cycles in 2009 ,one year after diagnosis.My hem/onc dr.has just told me I may be elegible for ibrutinab,but offer from drug company ends end of June.My Dr. doesn.'t know when it will be cost
lalykins
in
CLL Support
9 years ago
How Long To Wait For Trials and Treatments ?
The way I look at it with my prognostics, is that I’m going to need something like
Ibrutinib
or its successors in very approximately 5 or so years’ time, so thank you all for helping try out and understand these new therapies.
The way I look at it with my prognostics, is that I’m going to need something like
Ibrutinib
or its successors in very approximately 5 or so years’ time, so thank you all for helping try out and understand these new therapies.
Ernest2
in
CLL Support
9 years ago
Going off Ibrutinib: should we be worried?
This means my husband will now be off
Ibrutinib
for 18 days. Am very worried about this. He is in remission but I wonder what effect 18 days without
Ibrutinib
is going to have. The glands under his arms have already come up.
This means my husband will now be off
Ibrutinib
for 18 days. Am very worried about this. He is in remission but I wonder what effect 18 days without
Ibrutinib
is going to have. The glands under his arms have already come up.
MJN44
in
CLL Support
9 years ago
Here's your opportunity to support the listing of Ibrutinib (Imbruvica) on the Australian PBS - Deadline is next Wed 10th June!
[u]Given there are very few Australians with experience of
Ibrutinib
, if you'd like to help your falling behind the times Aussies with CLL, please go ahead and say your piece!
[u]Given there are very few Australians with experience of
Ibrutinib
, if you'd like to help your falling behind the times Aussies with CLL, please go ahead and say your piece!
AussieNeil
Administrator
in
CLL Support
9 years ago
HOLY WHITE COUNT!!
Not noticing and side effects of the
ibrutinib
. FCR starts tuesday so we will see the shit hit the fan then :) He is the crazy part for all of you concerned about how high your white count is....at last check i was at 780k...YES 780k!! Im going for the world record wish me luck.
Not noticing and side effects of the
ibrutinib
. FCR starts tuesday so we will see the shit hit the fan then :) He is the crazy part for all of you concerned about how high your white count is....at last check i was at 780k...YES 780k!! Im going for the world record wish me luck.
enelson3
in
CLL Support
9 years ago
participate in online study cll Aus
Hi everyone, I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of
Ibrutinib
on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options.
Hi everyone, I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of
Ibrutinib
on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options.
Chrisfer
in
CLL Support
9 years ago
Ibrutinib
I also feel nauseous from time to time .Does any one know if you can take anti sickness tablets whilst taking
ibrutinib
?
I also feel nauseous from time to time .Does any one know if you can take anti sickness tablets whilst taking
ibrutinib
?
PE1234
in
CLL Support
9 years ago
Ibrutinib - 8 months on
Dr Schuh once said that she thought
Ibrutinib
could help to reduce my effusions. Let's hope this continues. I have no doubts that
Ibrutinib
is a "wonder drug" and I know how lucky I am to be given it. Onwards and upwards. David - Hereford - age 76
Dr Schuh once said that she thought
Ibrutinib
could help to reduce my effusions. Let's hope this continues. I have no doubts that
Ibrutinib
is a "wonder drug" and I know how lucky I am to be given it. Onwards and upwards. David - Hereford - age 76
Haileybury
in
CLL Support
9 years ago
Cardiac side effects from drugs: Predictable?
Rituxan &
Ibrutinib
, have been associated with cardiac side effects for some patients. It would be interesting to know how sensitive this simulated heart model would be in testing CLL drugs.
Rituxan &
Ibrutinib
, have been associated with cardiac side effects for some patients. It would be interesting to know how sensitive this simulated heart model would be in testing CLL drugs.
ThreeWs
in
CLL Support
9 years ago
Hello
The first four days of starting the
Ibrutinib
I felt really poorly ,but the last few days I have begun to feel like my old self again .i have recommended the site to a lady whom I was in hospital with who is having a tough time .I do hope she joins as I feel it would really help her .
The first four days of starting the
Ibrutinib
I felt really poorly ,but the last few days I have begun to feel like my old self again .i have recommended the site to a lady whom I was in hospital with who is having a tough time .I do hope she joins as I feel it would really help her .
PE1234
in
CLL Support
9 years ago
Three Year Anniversary on Ibrutinib for my CLL
Friends, Three years ago today I started on
ibrutinib
as part of a trial out of OSU, and life just continues to just get better and better.
Friends, Three years ago today I started on
ibrutinib
as part of a trial out of OSU, and life just continues to just get better and better.
bkoffman
CLL CURE Hero
in
CLL Support
9 years ago
Reducing Ibrutinib even further!!!!!!!
Meanwhile, he is a very weary, sad man ...... maybe
Ibrutinib
simply isn't for him, who knows??
Meanwhile, he is a very weary, sad man ...... maybe
Ibrutinib
simply isn't for him, who knows??
lartington
in
CLL Support
9 years ago
experience CLL Ibrutinib Colitis
June 2014 started
ibrutinib
, 3 tablets per day. I experienced some diarrhoea throughout the use of
ibrutinib
, and definitely arthralgia. I managed the bowels with imodium and buscopan and the arthalgia with ibuprofen. In January 2015 I struggled to walk and was severely neutropenic.
June 2014 started
ibrutinib
, 3 tablets per day. I experienced some diarrhoea throughout the use of
ibrutinib
, and definitely arthralgia. I managed the bowels with imodium and buscopan and the arthalgia with ibuprofen. In January 2015 I struggled to walk and was severely neutropenic.
Corin850
in
CLL Support
9 years ago
FLAIR Trial - ErnieUK More Dehydration Round 5 FCR
The digestive system troubles do keep making me think of
Ibrutinib
, that I might be on one day, so I’d be interested if Psyllium would be any good to go with that, also if you would have to take them pre-emptively.
The digestive system troubles do keep making me think of
Ibrutinib
, that I might be on one day, so I’d be interested if Psyllium would be any good to go with that, also if you would have to take them pre-emptively.
Ernest2
in
CLL Support
9 years ago
The future for CLL?
There has even been talk that we may have achieved the breakthrough that Imatinib (perhaps better know as Gleevec) was for a sister leukaemia to CLL - CML or Chronic Myelogenous Leukaemia, with some of the new maintenance drugs such as
Ibrutinib
(Imbruvica).
There has even been talk that we may have achieved the breakthrough that Imatinib (perhaps better know as Gleevec) was for a sister leukaemia to CLL - CML or Chronic Myelogenous Leukaemia, with some of the new maintenance drugs such as
Ibrutinib
(Imbruvica).
AussieNeil
Administrator
in
CLL Support
9 years ago
Ibrutinib and bruising
I have been on
Ibrutinib
for 6 months with no other major issues. Any others on this board experience this, and what if any techniques helped you minimize the occurrence.
I have been on
Ibrutinib
for 6 months with no other major issues. Any others on this board experience this, and what if any techniques helped you minimize the occurrence.
astefanovich
in
CLL Support
9 years ago
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